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Ovarian Cancer National Alliance Gala, Tuesday, Feb. 6th., 6:30 PM at the Downtown Ritz-Carlton


DonRocks
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For several years, I've offered my services, free of charge, to the Ovarian Cancer National Alliance, even volunteering to be spokesperson for their event. "No," they say, "We've decided we want women as spokespersons, but please understand that we'll be glad to take your help, and also any donations you can give us."

This Tuesday, Kavita and her lovely eight-year-old daughter Mahira will be giving out gougeres at the New Heights booth - I may stop by as their guest; The lovely Nycci Nellis will be one of the speakers, and I pray for Nycci and her family that she has neither been touched nor affected in any way by this terrible disease which often strikes young women, of child-bearing years, in the primes of their lives. I have not been asked to participate, or to represent the event in any way; I pray for the women needing help that potential donors will be motivated by having their heartstrings tugged, and their fears ignited - once a man has lived through it, he is a Lifetime Member of "That Club" to which he cannot not deny membership, to which he cannot ignore (as much as he would like to), and to which he will go to extreme measures both to minimize membership, and also to minimize the pain of the members, because ALL of us want this god-forsaken "Club" that we're in down to zero members. Zero.

But just because a man can't participate in this gala doesn't mean Ovarian Cancer doesn't affect the lives of men who, ultimately, represent at least 50% of the potential donors. And if you want to appeal to men, maybe these men should be listening to someone standing in my shoes, ten years after the most horrible thing that could ever happen to a woman - worse than AIDS, worse than heart disease, worse than breast cancer - worse than any other disease in the world to a young woman hoping to bear children - came to pass.

Here is the speech I would have given on Tuesday. It would have been an unedited, word-for-word, reading of a letter I wrote over ten years ago to my wife's doctors at Johns Hopkins when I was desperately trying to help her find answers. On April 24th, 2001, Karen received a grave diagnosis of "probable stage 3C ovarian cancer," just three days before our planned wedding on April 27th. We married anyway, and fought the fight together as a team. This letter was written just over a month later, after the first of her major surgeries, and right after having received the initial results of her Johns Hopkins' pathologies (which simply did not fit the presentation - I spent hundreds of hours on the internet trying to put myself through medical school, spending every waking minute working towards what would be a second opinion at Sloan-Kettering and ultimately a correct third opinion at Armed Forces Institute of Pathology right here in Washington, DC. I knew it wasn't pancreatic, and I was right (it was an almost unheard-of variant of ovarian), but at the end of the day, all this did was buy her maybe six extra months))

People know I've had a lot of tragedies happen to me in my life, and at this point, I'd agree with those who say, "an unfair number of tragedies." But no matter what you've been through, when you're in the middle of this diagnosis: you put aside fatigue, eating, sleeping, illness, work, children, everything else in your life, and you try to help that poor, stricken girl by working together to defeat this deadly, monster of a disease. And you drop anything and everything else in your life to do so. You work round the clock until you pass out from exhaustion, and then you wake up and then you do it again.

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06/04/01

To: Dr. John Marshall

CC: Dr. James Barter

From: Don Rockwell

Re: Karen Rockwell’s Appointment Last Thursday

Dear Dr. Marshall,

This letter is to follow up on my wife’s appointment with you last Thursday. First, we wish to thank you, Dr. Barter and your nurse practitioner for being so kind to us, and providing us with some degree of reassurance in our lives, even if that reassurance only lasted for a day.

As we discussed, we met with Dr. Daniel Laheru at Johns Hopkins the following day for his opinion. Apparently, the folks at Hopkins have taken a great interest in Karen’s case, and have come to a conclusion that this is indeed a pancreatic primary based on the pathology and the dilatation found in the MRCP exam (which until Friday, they had never seen before, so the MRCP information was conveyed to them via telephone by Dr. Salcedo, who had also never actually seen the films).

Nevertheless, Dr. Laheru – who spent a great deal of time with us and was also very kind – looked at the MRCP films with a radiologist, and feels there is a clear dilatation in the pancreatic duct. The slide he showed us was, if I’m seeing this correctly:

Ex. 7206

Se. 10

Im. 7

Ax. I 13-1

which I marked with a yellow sticker. It’s on the top page towards the upper right-hand side, and shows a pronounced dilatation that is very suspicious for a malignancy in the head of the pancreas, in his opinion. No mass is seen on this film.

He had Karen perform yet another imaging study – her 4th – immediately after we left his office. This is apparently a very specialized CT-Scan that produces very small cross-sections which then can reproduce an almost 3-D-like virtual image of the pancreas. I do not remember the specific name of the test, but he said he was going to telephone you last Friday and discuss everything with you.

It bears repeating that you saw both this MRCP film and the corresponding report from the radiologist –which noted a “mild-to-moderate” dilatation - last Thursday, so perhaps Dr. Laheru didn’t spot anything new.

Dr. Marshall, the dilemma I’m facing is this: Hopkins wants to go down the pancreatic route. If we do that, then Karen’s fate is sealed. Even if this CT-Scan reveals some sort of blockage, can we really take the chance that this isn’t garden-variety peritoneal? I’m willing to accept the unusual microscopic presentation of the pathology, which Hopkins seems to be weighting quite heavily in their diagnosis, but I am having trouble reconciling the following:

Karen is 32, slim, muscular and athletic, does not drink, does not smoke, and has no family history of this except for her grandmother, who developed a stomach cancer when she was 80 but did not die from it. Karen has NO symptoms right now, other than pain from her incision. Yesterday morning, she went out for a walk and even attempted to jog before realizing that her incision was not ready for that. She went out again yesterday afternoon, and a third time yesterday evening. She is beginning to do deep knee bends, calf raises, and working with light weights doing forearm curls. She is the single healthiest person I have ever known in my life.

Karen had widespread activity in her abdomen, but has no apparent metastasis to any of the typical pancreatic places – liver, duodenum or lungs. Wouldn’t someone with this much abdominal metastasis be thinking twice about jogging if that spread was caused by a pancreatic primary? Add to this the fact that a pancreatic diagnosis would mean near-term death for Karen, and how can we not pursue treatment for a peritoneal primary even if that means it may be the wrong course?

Unfortunately, the pathology slides had been sent out to AFIP who received them on May 30th. I called down there, and they said their report will be ready probably by Tuesday or Wednesday. I’m going to try to arrange for me to physically pick the slides up and drive them over to Georgetown, and will also get you their report. I have the surgical dictation from Dr. Montz, and enclose a great deal of paperwork with this note and her films. The MRCP films are in the green packet marked “M.R.I.” and there’s a yellow Post-It pad on the slide that Dr. Laheru put such great emphasis on. I do not have a copy of this paperwork, so if you could have a copy made for yourself, that would be helpful. Who knows, I may end up at Sloan-Kettering later this week as a final resort.

Karen needs to begin post-surgical treatment very soon, and I feel like I’m hacking my way through elephant grass with a machete trying to figure out what’s going on. You cannot imagine the stress that my ignorance is placing on me, trying to sift through the conflicting opinions of experts in the field, but you can bet that at this point, a peritoneal primary – or an unknown primary – sounds a whole lot better to me right now than advanced-stage pancreatic cancer.

Dr. Marshall, please tell me what to do. I believe this latest CT-Scan will give us additional information, but am not sure I want to pursue treatment for pancreatic cancer even if something shows up on it. There are just too many contra-indications, even to my layman’s eyes.

Thank you for taking the time to read this, and I’ll look forward to hearing from you or Dr. Barter when you get a free moment.

Kindest regards,

Don Rockwell (and Karen)

(703) 534-4949 – Home (with answering machine)

(703) 298-2568 – Cell (rarely on)

DonRocks@AOL.COM (which I check multiple times per day)

P.S. I apologize for not being home right at 5 PM last Friday – the traffic coming back from Hopkins was very heavy.

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This is what it all amounts to. I have no desire to be rich and famous; I want to help people in need. Period. I want to put myself out there, as a model for how to be in a powerful position, and to use that power for human goodness and decency.

When Karen was on her death bed, I asked her, as well as I could: "Karen, what am I supposed to do with the rest of my life? I might be here for another fifty years? What do I do?!" She looked over at me, staring for perhaps ten seconds in a fentanyl drip/patch-induced haze, and murmured, in something not unlike a barely audible whisper, "Help older people."

Ovarian cancer is attacking more younger women, but remains primarily a disease of middle-aged to older women, so devoting myself to this cause would be absolutely in keeping with Karen's wishes. I don't need to just do "one thing," but gosh darn it, this is one thing that I wish to do. For all the GUYS out there like me who have been left alone - alone with a loneliness so lonely that you spend years counting minutes. You can't complain when you're going through it, but you know what? At the end of the day, you're in the second-worst possible situation of anyone else in the world. And nobody even really notices, or cares, because they're so busy helping you take care of the only one who's in a worse place. And when she dies, you're left all alone, with nobody to help you. I want you to know that I'M HERE TO HELP YOU. Write me at donrockwell@dcdining.com if you've ever been left widowed by the loss of a cancer-stricken spouse. I've been there, I know what you did to take care of her, I know what you're going through now, and I can help you. I promise you I can.

When you see Kavita and Mahira at the New Heights Table on Tuesday evening, please give them a hug for me. They are the most beautiful mother and daughter you could ever hope to see, and I love them both with all my heart (and in case you think there's no such thing as a happy ending, all you need to do is meet Mahira and ask her how she liked "Hugo" (we just saw it)). When you walk away, and especially when it comes time to make a donation, please remember Karen, who never had a chance to have a Mahira of her very own. And don't think for a moment that this devastator couldn't possibly happen to you; it could. And I promise you that - at least in the short term - there is no worse fate than to be left a widow, not even death itself.

Donate generously, please? And take a moment to thank Nycci - and everyone else - for donating their time to this extremely powerful and sad cause.

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I was diagnosed with ovarian cancer a few weeks prior to my 24th birthday. That was 28 years ago. I was lucky that Sloan Kettering shared their treatment with my treatment team here. It was brutal, but had I been diagnosed 5-10 years earlier, I would have had few options. Thank you for posting about this Gala. Had it not been for others' generosity in the past, I would likely not be here. I will be donating to this event.

It seems somehow inadequate, Don, but I am so sorry for your loss.

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