Saturday, May 22
This week Elaine entered an important second stage in her cancer experience: the beginning of her chemotherapy. Monday night will mark one month since a tremendous abdominal surgery. By earlier this week, she was walking 3 miles each day on the beach, and Wednesday she did 4 miles. There is no way to describe her recovery except “spectacular”.
Last week, she had a “port” installed in her chest, a wonderful advance in this type of circumstance, that allows clinicians to plug in medication lines or take blood without having to stick her. Positioning the port is a slightly involved outpatient procedure, overseen by an Interventional Radiologist.
Then, Thursday of this week, she visited Dr. Buckley’s office for her first of 8 cycles of chemo, a cocktail of two drugs—Taxotere and Carboplatin—that have become a protocol for ovarian cancer. Then yesterday, she returned for an injection of Neulasta, which boosts white blood cells to fight off infection. The chemo devastates the body’s white blood cells, so bolstering them again immediately is critical. The next cycle of the cocktail will include Avastin, which inhibits the development of blood vessels that would feed the tumors.
I was hoping we might leapfrog this round of more conventional, one-size-fits-all therapy, so I reached out to identify the researchers spearheading the genomic (DNA sequencing) efforts that can be used to create personalized therapies. Alas, that work is underway in ovarian but still early, and the patients allowed into the clinical trials have already been through conventional treatments. So, those approaches may be available but down the pike. The upside is that, as more time passes, the knowledge base and practical applications in this area are rapidly expanding and becoming more robust.
It is clear that managing this situation—and particularly the drugs—is staggeringly expensive. For us, whose work over the last decades has been in healthcare, it has underscored the terrible plight of people who do not have access to the great coverage that we do, or who face personal financial ruin just trying to cope.
One of the most comforting and encouraging aspects of Elaine’s care has been the realization that her physician team, generally, and her Gynecologic Oncologist, specifically, are top-flight. Honestly, when I heard the diagnosis, my heart sank that we were in Jacksonville and not a major metropolitan and cancer center like NYC or Houston. But, as it turns out, the world of GYN ONCs is relatively small and close-knit. Dr. Buckley is held in extremely high regard locally and is very involved in the international community and activities in his discipline. He’s also very knowledgeable, open to questions and suggestions, and gracious. Among the first things he did was give Elaine and me his email address. It would be difficult to hope for more than that.
Elaine has been her normal buoyant, matter-of-fact self through all this. We’ve read the materials and the literature, and we have no illusions about the difficulties that often accompany the condition and the treatments. But she’s as fit as she can be at this point, we’re careful in how we eat, and we’re trying to take one day at a time. We know that there are challenges ahead, but we’re trying to not let them catch us off guard.
At the same time, we’re moving ahead with projects here at home. Before all this began, we had begun a complete renovation of our kitchen. Last weekend, the new cabinets went in, and this week we should get the new granite countertops, the sink, the water turned back on, the range and dishwasher reinstalled, and a new fridge. Several people have pointed out that the distraction has probably been a good thing. I’m trying to wrap my head around that perspective.
The outpouring of support has been overwhelming. Last night, Helen and Phil Sullivan—Helen’s one of my very favorite offshore sailing crew pals—dropped by to bring a huge cornucopia of frozen cancer-specific meals that she had prepared. Helen is a very accomplished and enthusiastic cook, had researched this in depth, and marked each meal with labels that indicated its appropriateness for things like nausea, constipation, sore mouth, diarrhea, or “taste alterations”. The sheer methodical effort and care that she put into this were breathtaking. It’s something we won’t ever forget.
Other people that we’ve only connected with every 6 months or so in the past have called consistently, cheerfully. Elaine’s received lovely presents. Yesterday, a beautiful robe appeared. There have been audiobook subscriptions, help when my schedule has conflicted with something Elaine needs to do, or MENSA puzzle books. (Elaine’s the fiercest word puzzle competitor I’ve ever known.) The list goes on and on of deeply thoughtful notes, phone calls, and doo-dads. Every day we hear from many people: Elaine’s siblings, her close work colleagues and friends, and our broader community of friends around the country, all of whom have really become a lifeline for us as we work through this difficult circumstance. Everyone knows we don’t need anything, so the focus has been on delighting Elaine, which every effort has easily achieved. (I can promise you, she’s an easy mark.)
Now that our kitchen is almost back together and the living room no longer looks like we set off a grenade there, she’ll undoubtedly start painting again and continue her walking. We’ve adjusted our schedules to accommodate a week of serious downtime every three weeks for the next 6 months, and we’ve scheduled a couple trips to the Keys and other places where we can do not very much with friends or while looking out over the ocean.
There’s not much to do now but to hunker down and weather the storm, and I’m pretty sure we both know how to do that.
Saturday, June 12
It has been a little more than 6 weeks since the surgery where Elaine’s doctors found her tumors, and about 10 weeks since she first presented complaining of symptoms. Her wounds have healed beautifully. She is strong and her spirits are high. Most important, we’re over the shock, and so we’ve settled into the stark truth that this is about how we can manage a very serious situation over a very long period of time.
The texture of our lives has changed. Of course, there’s the feeling that we’re sitting under the Sword of Damocles. But suddenly, Elaine doesn’t have a day that’s chock full from beginning to end, and sometimes I can see she’s a little at odds that she doesn’t have as much to do as she’s used to. She tires easily and will take at least one and sometimes several naps every day. She lost a good deal of weight through the surgeries, and must consciously focus on regaining at least some of it. She has lots of minor pains and inconveniences associated with her condition, but those are gradually ameliorating.
Meanwhile, for the next few months, I’ve recalibrated my schedule so I can be here for the week after her chemo treatments. I can travel in the downtimes. I’ve further ramped up my daily walks, and this has helped me stay centered.
I believe Elaine’s solid good sense and upbeat attitude have saved the day here. Truthfully, I was knocked off balance, and I’ve just begun to regain my footing. Hopefully, we’ll both get better at this as time goes on.
Last Thursday, Elaine had her second of eight rounds of chemotherapy, an intense 4-hour infusion of preparation drugs (steroids and anti-nausea), Taxotere, Carboplatin, and Avastin. As I mentioned last time, this is followed up a day later with a shot of Neulasta, which bolsters her white blood cells in the bone marrow to fight infection. Two days later, she still feels OK, but her joints are sore and there’s a metallic taste in her mouth. We’re hoping that this will be the worst of it this time, but it’s doubtful.
Next Friday, she’ll have the stent removed that was implanted during her first surgery, on April 1st. This kept the ureter open and saved the kidney, and it came at the small price of endlessly nagging discomfort. Getting it out will be like coming out of the darkness into the light.
To some degree, it could be argued that Elaine has “breezed through” this siege of the last two and a half months. In addition to fabulous care, I keep returning to the terrific diet she maintains for us and her rigorous efforts to remain fit. Now, during the aftermath of the chemo treatments, she’s being especially careful. For lunch, she had some of the cancer-friendly soup that our friend Helen prepared. Tonight, we’ll have pasta with mushrooms, dried tomatoes, and asparagus, another recipe that’s aimed at being particularly nutritious during chemo. There’s a larger point here, though. EVERYTHING matters. Swept up into it as we have been, that fact is suddenly inescapable.
Elaine’s found herself in a store here at the beach that caters to women living with cancer. They have hats and clothes and other things that are right for women going through this. Elaine told me that her favorite was a breast cancer survivors’ t-shirt that said, “Yes, they’re fake! My real ones were killing me!” Gallows humor everywhere.
Sometimes it’s the seemingly small things that are most provocative. Two weeks ago, Elaine showed me that when she twirled her hair with her finger—an idle habit she’s had as long as I’ve known her—three or four strands would simply dislodge and pull out. By week’s end, it was clumps. So last Friday, her good friend and hair stylist Deb Tafflin cropped her hair close, about a half inch all the way around.
We both had been adamant that losing her hair is of no importance in the scheme of things. But old familiarities die hard. Seeing her pull bunches of hair away was unnerving, and I knew that, for her, it nailed down the reality of what we’re going through. We know it’s symbolic as much as anything, but it was still disturbing. Elaine maintained she looked like a hedgehog. Actually, I thought she looked great. However, she IS still shedding like a golden retriever.
We’re adjusting. She’s doing so well I want to shout. The attention of so many friends has been genuinely gratifying. We both know things could be a lot worse, and are for many people. We’re getting through this just fine, all things considered.
Saturday, July 24
On Thursday, Elaine went in for her 4th of 8 every-three-week chemical infusions, a 4-hour exercise involving three very powerful drugs, followed by another 24 hours later. It is a communal event. A group of women sits together, each receiving a specific mixture. Some have been fighting cancer for 10 years or more. It goes into remission, then recurs. The doctors dig deeper and deeper into a limited arsenal to find something the cells will respond to. It is not a pleasant prospect.
A couple months ago, I visited close friends, both oncologists, who now live in Truckee, CA, just outside Tahoe. Elaine was just beginning the chemo treatments. Larry told me, “The first round is the worst, because it’s unknown. After that, people say, ‘Well, it wasn’t pleasant, but I can get through this.’ Then around the 5th cycle, they’re literally sick to death of it and thinking, ‘Oh, just go ahead and shoot me!'” Elaine’s not there, though.
So far, the process has gone like this. For three days surrounding her infusion, she takes a steroid, which gives her a high that lasts until sometime around Sunday noon. Then she crashes, with weakness and flu-like symptoms that send her to bed intermittently for 3-4 days. In a sense, it hasn’t been as bad as many people imagine. Most of the time, Elaine feels good, although there is a constant physical and mental cloud hanging over us. She is strong and in high spirits, her wise-acre humor shining through. The effects of the drugs are potent, cumulative and always there, and, in the afternoons, she’ll flag, as though she has just finished a marathon. “I think I need to lie down for a little while,” she’ll say, and she’ll sleep for two and a half hours. We try to keep in mind that what she’s dealing with are the impacts of the best solutions currently available, rather than the problem. The science moves slowly, but it does progress.
In general, the mortality rates for different kinds of cancer are still nearly what they always have been, but the survival times have been lengthening. A great deal of work now is being focused on using the patient’s own DNA to tailor the drugs in a way that can be optimized by that person’s metabolism. In this environment, with so much effort directed to the mechanisms involved, we can’t help but hope that a breakthrough is within reach. Elaine’s done a great job of learning to indulge herself in the things she enjoys. She is reading constantly again, something she hasn’t had the time to do in years. She has always been a wonderful cook, but now she has the time to dive into that. Yesterday, after a trip to the farmers’ market, I was treated to a fresh blueberry cobbler. A week from now, we’ll head down to our haunt in the Keys, where she’ll paint and we’ll enjoy the scenery. She’s threatening to start playing piano again, although the tips of her fingers have become a little numb from the drugs, and maybe even re-take up bridge. At one time, she was a very competitive bridge player.
Of course, the loveliest part of the experience has been the ongoing attention. A couple weeks ago, most of Elaine’s large and rambunctious family converged here for a weekend that was filled with the beach and good food and snappy repartee. (Delivering a hello kiss, her brother said, “How ya doin’, Baldy.” Winking every day, there are calls, emails, and letters from friends nearby and far away, with unending offers to come stay, do small errands, or simply spend time together. A couple times a week, she has lunch with friends, which keeps her in touch and happy. In some ways, she’s never been in such demand. When she goes out, she’ll sometimes wear a headdress—our friends Judy and Lynn send her an unbelievably wonderful assortment of beautiful headscarves and hats—or even, when the occasion calls for it, one of the cool, AMAZINGLY great looking wigs she’s acquired. But most often, in the house or around the neighborhood, she’ll go natural or with just a baseball cap. Everyone’s gotten comfortable with Elaine’s new look, but the deeper point is that Elaine is very comfortable with herself. This week brought some particularly good news. Elaine had a test for genetic mutations (BRCA1 and BRCA2), which, when positive, signals a higher propensity for breast and ovarian cancers. The test came back negative, which means that her family members can breathe a big sigh of relief. In an odd way, we have settled in for the long haul. The tone and pace of our lives have changed subtly but palpably. There is a great deal to learn and to process. But like others in this situation, we’re learning to genuinely take it as it comes.