The End
Wait, what? The End? What do you mean?
Well, Sarah wanted me to write this. So, I’m writing it.
A year ago, as Sarah was getting ready to say good-bye to our world as we know it, she was coming to terms with what she felt was the most likely afterlife. She had decided that she didn’t really believe in God or heaven. At least not in the way they talk about it in Church. We both used to be more comfortable with something that was closer to “the force” from Star Wars. An energy that bound everything together in a beautiful way.
A friend asked Sarah where she thought she might go after death. On April 27, 2011, Sarah responded with the following:
“I believe that life flows and ebbs and forms beings (trees, fish, dandelions, dung beetles) that get their energy from a giant pool of energy that surrounds everything (don’t ask me to get specific). When a new baby (lion cub, cockroach, seedling) is born, it takes its energy from the same pool, and when it dies, its energy returns to the pool and dissipates into a million(?) (billion?) pieces. I would prefer that our souls get to keep some of their individuality so I can come back and haunt everyone, visit the kids, go places I’d like to see. There are also a great number of people and pets that I need to see when I get there; I’ll be very disappointed if I can’t have lunch with my grandpa sometime! Maybe there’s a special package you can choose when you get there… if it’s merit-based, I certainly won’t win, but I can get a little extra-credit for making people laugh? Even if the jokes were raunchy and politically incorrect?”
Since Sarah died, she has convinced me that while the energy thing might be part of it, she also got the other part of her wish – maybe a bit of heaven on Earth.
Sarah’s nurse called the day after Sarah died, not knowing that she had passed, and asked how she was doing. When I told her she had died, she said, “I had a dream last night and Sarah had taken out her oxygen tube and wasn’t using it. I told her to put it back in so she could breath. But Sarah looked at me and said, Rose, I’m okay.”
We had a birthday party for Sarah in November. 85 people came to the house to remember her and have a nice evening meeting other friends and sharing wonderful stories. The evening was a success and I was happy to get in bed that night. At about 3 AM I woke after an experience that I cannot call a dream. Sarah was there with me before I woke. She was dressed in something resembling a Halloween costume (it was only a few days after Halloween and she loved to dress up). I said to her, “Thank you for coming.” She looked at me and smiled. There was a very warm sensation between us. She never said anything, but she didn’t have to.
Over the Thanksgiving holiday, our boys, Sarah’s parents, her sister, our nephew and I went to St. John, USVI and took Sarah with us, too. We had a wonderful week there. On Friday morning, we each took a turn spreading her ashes on the beach and in the water at Francis Bay. A place that was dear to Sarah – where she had wanted to be. It was a somber occasion, but one of great relief to us all as well. Sarah was now “home.”
The boys and I returned to St. John for another week this March to spend some time there, just the three of us. We wanted to be close to Sarah and feel her with us. And we did. The weather was perfect. We spent lots of time on the beach, we sailed a few times, we met new friends. It was fantastic. Then on the way home, Sarah spoke to me in a way I could not have ever even made up.
It turns out that Harry Connick, Jr. and his family were on St. John the same week we were there. I didn’t know, but I’m sure Sarah was all over it. When we were leaving to fly back State side, we found out that Harry Connick and his family were on the same flight we were taking back to Newark.
Before I go on, if you have not read the story about Sarah meeting Harry Connick, Jr. on April 28, 2011, then you have to read that first. Otherwise, read on…
The boys and I boarded the plane knowing we had three separate seats around the plane. I had hopes of getting people to move so at least the boys could sit together, but with a full flight I was not feeling very good about it.
Sarah stepped in, and made it all come together.
Seat #1 was in row 7. A nice woman and her 6 year old daughter had an empty seat for my youngest. He was thrilled and very happy to have a playmate for the flight. Of course, my oldest said, “Dad, I want to sit with a kid, too!”
Seat #2 was in row 11. A nice woman and her son with the empty seat next to the window. #2 was happy. So was I. Stress relieved! Now back to my seat.
Seat #3 was in row 29. I arrive at my seat to find an empty row. Oh well. The boys are happy, no sense in dragging them back here. And, I’m sure someone will end up sitting here anyway. I sat and waited.
After the plane was almost full, a man ended up standing next to me. I looked up and it was Harry Connick, Jr. I played it cool, but was in complete shock. He and his younger daughter ended up sitting next to me for the flight.
Harry was really nice. We talked for maybe 15 minutes, but that was all I needed. I really just wanted to be able to thank him for what he had done (unknowingly) for Sarah. He was honored to hear the story and was very thankful. When we got off the plane, he introduced me to his wife, Jill, and his older daughter as well. To be honest, they all were wonderful and asked about Sarah. It was a very nice experience.
Good Karma? Crazy coincidence? There are chance things that happen in our lives, but I firmly believe that this was Sarah, in a higher power, intervening and saying, “Ed, thank you. I’m doing great. And so are you and the boys.” Funny, now that I think of it, maybe she was also saying “thank you” to Harry at the same time. Two for the price of one. Nice work Sarah.
So, is this “The End”?
No! The Carcinista is to be continued…
Hermit Crab
I seem to have dropped off the face of the earth, rants about pinknausea notwithstanding. I’ve been trying to figure out why I don’t feel like talking right now, and it seems to come down to chemo. (Doesn’t it always?)
Starting actual chemo again (vs. a clinical trial or biologic or something) threw me for a loop. Apparently I’ve blacked out how crummy I feel after infusions, because when I collapsed into bed at 5:30 on day 3 of the last cycle, I was surprised. Mr. Wonderful said, “Don’t you remember? This is usually the time you start feeling like crap,” but I had forgotten it. Like how you swear immediately after giving birth that you will never, ever, ever do that again, then twelve months later you’re all, “Let’s have another one!”
So I spent day 4 and 5 in bed, me and the cat and the Compazine, and by the end of the weekend I started to feel like myself again. But apparently aging your body forty years in four years has some drawbacks, and I no longer rebound like I did in 2006. I’ve been having trouble just getting out from under the coughing courtesy of Estes Park’s elevation, and still haven’t resumed my exercise schedule. My lungs don’t like it, not one little bit – not even climbing the stairs, and last night Mr. W and I had a giggle at me huffing and puffing after pulling off a tight long-sleeved t-shirt.
Now I’m at The Cancer Factory for Cycle 2, and anticipating another week of feeling lousy. But why that has to send me into hiding for the next two weeks as well, I can’t figure out. I’ve turned into a terrible phone friend, forgetting to return messages and schedule dates. Some days I just drift along until it’s time to get into bed again, and that’s about all I can handle. But other days I’m doing my little suburban-mommy thing, driving and shopping and cooking and all, yet I still can’t manage to get my head out of my domestic bubble.
So I guess this column is a sort of apology, to those I owe phone calls to, or to those with whom I made tentative plans and then never followed up. It’s not you, it’s me. It’s taken me two years of therapy to be able to accept these words and feel comfortable saying them: I’m doing the best I can.
Photo courtesy here.
Finally.
For those who aren’t on facebook (I understand, really), you might have missed my jubilant post-blog update on Monday: THE TRIAL DRUGS ARE WORKING. Those nasty little grey capsules that make my mouth taste like a dirty ashtray are actually worth the loss of my taste for chocolate. (Sad but true.)
I climbed out of the PET scanner on Monday and (after a brief trip to the cafeteria for my first food in over twelve hours) went straight to the Phase I doctor’s office. His preliminary read of the scan thirty minutes later showed a “marked decrease” in the metabolism* of the cells in my calcified tumors and lymph nodes, the ones that we had pegged as stable. While he offered no opinion of the new mets in my lungs, and I’ll have to wait for a full radiologist’s report on the scan for that, he was very excited about the “dramatic” change in my tumors. He said that the trial had shown the best results for ovarian patients, and that they were thinking about designing a Phase II trial for ovarian patients based on the good results. Including mine!
I’m beyond thrilled to get some good news for the first time in eighteen months, and REALLY glad that all of this rigamarole that they (Big Pharma) are putting me through for this drug might actually have an impact on other patients of this crappy, insidious, sneaky-ass disease.
Next week: further results of the PET scan; CT scan and results, and a week off the drug. Rash? No rash? Increased energy? We’ll see.
But you can quit mentally divvying up my couture for the near future. Vultures.
*PET scans work by reading the rate that your cells metabolize an injected radioactive sugar solution. Cancer cells metabolize sugar at a much higher rate than healthy cells, so after sitting with the solution in your bloodstream for an hour, they run you through a scanner and read the “hot spots” that have metabolized the most radioactive solution. These are measured by the amount of radioactivity they emit, and the rates are compared from scan to scan.
Photo courtesy images.
Panic On The Streets of *mingham
WARNING: There will be a mild amount of “sharing” in this post. Read at your own risk.
I woke up to the alarm this morning, awake and ready to go to the gym. Ungodly early, but apparently I got enough sleep last night because I didn’t feel tied to the bed. As I was having a quick pee, I sneezed. And my intestines, right in the region of my ileostomy and reversal, started making a funny noise. It sounded a lot like it did when I had the ostomy: sort of a squirty, bubbling sound that I hadn’t heard since then. The noise repeated, again and again, for about thirty seconds straight.
I panicked. I knew this was the bowel perforation I had so skillfully (through no action of my own) avoided since starting the Avastin. That with my sneeze, some aneurysm of my small intestine had finally popped, and I was doomed. Maybe the recent onset of fatigue has made me jumpy. So I did what any normal, freaked-out, cancer patient would do: I called my doctor.
Fortunately, she was awake, and called me right back. She talked me off the ledge, and reminded me that, no matter how recently the perforation had occurred, if I were actually experiencing one I would also be in excruciating pain. Which I was not.
So, faith shaken but restored, I put on my sneakers and headed to the gym. With my phone in my pocket. I’m not really sure how Mr. W managed to get back to sleep, but he did.
Now that my panic has faded, and I’m trying to squelch my embarrassment at escalating a series of gas bubbles to a medical emergency, I have a little time to think about why I got so worked up. It’s not like me to jump to the worst possible scenario when something weird happens; I usually find logical excuses for what’s going on and wait for more evidence before calling in the troops. (Possibly why we find ourselves in this mess to begin with.)
Which means that I’m less emotionally stable than I initially appear. Clearly, four years of this process have rocked my sense of stability enough that I’m more Chicken Little than hakuna matata these days. Sometimes I really feel the fact that I’m living on borrowed time, and that at any moment the blow might strike that precipitates a cascade of medical whatevers and sucks me back into the depths of being a reallysickcancerpatient. I don’t want to feel that way – I want to be making the most of every minute, living life to the fullest, not waiting for the other shoe to drop. (I figured since I haven’t entered remission, I get the luxury of not having to wait for that.)
And yet. Deep under the surface veneer of high-functioning girl-in-treatment lies a wavering doubter who’s got her hair-trigger finger on the on-call button. I wonder how she’ll do with the results of Wednesday’s CT scan.
Sort of a lot, really, to try to get out of an early-morning workout, dontcha think?
Don’t Come For The Housekeeping
I love entertaining. I don’t know whether I inherited it from my mother, who also loves throwing a good party, or whether it just gives me the excuse to wear frivolous shoes in the dead of winter when I don’t have to leave my own house, but I love hosting guests. I adore planning the menu, shopping for ingredients, and cooking for an audience that’s usually more appreciative than my kids (although Mr. Wonderful adores all my food, the young’uns aren’t quite as culinarily adventurous yet).
It’s been really hard, as I’ve gotten sick/well/sick/well over the past few years, to have to pass off hosting duties to other people. I’ve been lucky enough that some of my mother’s visits have coincided with social events at my house, in which case I’ve relied, in varying degrees, on her shopping, cleaning, and cooking assistance. But for the most part, I’ve had to let numerous gathering opportunities slip by. I just didn’t have the stamina for prepping the house, kitchen, table, bar, appetizers, etc., to be guest-worthy. And I wasn’t willing to let my standards drop.
We had a big New Year’s Day Open House this year, a big drop-by-whenever food-and-drink extravaganza that strikes me as the best kind of party for the current commitment-phobic party-goer. It was amazing, with lots of friends from different walks of our lives, hordes of kids, plenty of delicious food and Champers all afternoon. But the set-up took a few days, with the cleaning and all, and clean-up (thanks in no small part to Mr. W again) a couple days afterwards. I just don’t have the endurance to throw big-time shindigs as often as I want.
This weekend, we had some friends and their kids over for dinner on Saturday night. They’re good friends, our kids are all great buddies, and I know they’re casual folks. And although I ran the vacuum before they came, and made the little ones put away their stuff (aren’t parties great for clean-up impetus?), I stopped caring about the dust bunnies under the couch, or the piles of stuff on “my” end table. I was content to serve dinner on paper plates, and the condiments (salsa, sour cream) out of their containers with spoons. I think I might have gotten over the mortal fear that I would be judged on not decanting everything into little serving bowls, and accepted the fact that not using every dish in the house is, in fact, a worthwhile excuse for wrapping the tortillas in foil.
I can either expend my somewhat limited daily ration of energy preparing a delicious meal for my friends, or I can waste it worrying that anyone will notice that, behind the closed shower door, it’s maybe been a couple of days weeks longer than White House standards probably dictate since I’ve scrubbed the tub. And that’s just ridiculous, seeing as how I have a much better time hosting a party than cleaning my porcelain.
So the next time you come for dinner/brunch/a cookout at my house, you should be honored to have been asked. It means that not only do I love you enough to want to cook for you, but I trust you and the depth of our friendship enough to realize that you don’t love me for my table-setting prowess, and you’ll be my friend with or without the cobwebs across the recessed lights. Bon appétit!
Photo courtesy bonappétit.com
Get Up Offa That Thing: Exercise Helps Cancer Patients
Don’t hate me because I’m in good shape.
When I was younger, I was a sloth. My mom signed me up for gymnastics classes, diving classes, riding lessons, the local swim team. I didn’t last long in any of them. The problem was, they all involved exercise and effort. I was much more of a sit-down-and-read-a-book kind of girl. Because sports were mandatory at my school, I volunteered to be the goalie for both field hockey and lacrosse, if the coach would let me get out of running laps with the rest of the team. (Hey, if I could stand in one place for the whole game, why did I have to get in shape?) I was even voted “Class Couch Potato” in my senior yearbook.
Then, when I was 21, I met this guy. He never sat still. Rollerblading, cycling, running, hiking, sightseeing… if I wanted to spend time with him, I had to get up. But still it took an engagement ring before I really got serious about working out. (Holy crap, a wedding gown? I better get my rear in gear.)
Fast-forward to the birth of my first son. All of a sudden, working out became a treat (sort of), a ninety-minute period of alone time when I was responsible for no one but myself. And, as any mother, stay-at-home or otherwise, can tell you, we don’t even get that in the loo. If I had to exercise for some peace by myself, I’d do it. (Never mind that it had to be at 5:30 a.m.; that just gave me the excuse to nap when the baby napped.) It turns out I am vainer than I am lazy.
Fast-forward again to my life P.C. (post-cancer). When I recovered from my first surgery, I realized that without all those tumors inside me, I felt better than I had in at least a year. Possibly since before I had had kids. So I kept working out. And during the IP chemo, which I was told came with “crushing fatigue” (boy, did it ever), I kept working out. Some days just a lurch down to the bottom of the hill and back, but I got moving. It helped me to feel in control of my body, in control of my life, in a disease process that is totally out of the patient’s hands in so many ways. It gave me time to think things through while I staggered, and make some personal decisions without interruption. I’m convinced that having a pretty high percentage of muscle mass helped me come through the six rounds of IP cisplatin as strongly as I did.
Once chemo is over, every time, and I start crawling out of the pit, exercise helps me feel like a normal person (at least until I catch sight of my squishy, pale, bald self in the weight room mirror). It helps me get my energy back sooner than I would have just waiting inside my house. It helps me get rid of the carbo-belt that develops around the waistband of chemo patients, thanks to the fabulous anti-emetics available nowadays and the raging cells looking for sugar.
Today, I found a study that shows how cancer patients that get regular exercise have more vigor and less emotional distress than cancer patients who don’t. (Sign up for a free MedScape account to read it – they have great articles.) Which I probably could have told you without the grants and the patients and all that time, but now we have proof.
So my advice for cancer patients: GET UP. Lurch down the hallway and back again. Once you can do that five times, add some stairs. Go for a swim. Walk the dog. Go down to the end of the driveway and get the mail. Once you finish chemo, treat yourself to a gym membership or a daily walk with a friend, and keep moving. The oxygen will help your body recover; the muscles will burn off the spare tire, and the companionship will keep you coming back.
Look, I love an afternoon in a comfy armchair with the cat and a good book as much (and probably more) than the next girl. But it isn’t going to prolong my life the way being in shape will.
Besides, the chair and the cat will still be there in an hour.
White Out
It snowed here overnight and most of the morning. While I hate being cold, I love snow. Hey, if it’s gotta be freezing, it might as well be pretty. (See, there I go, form over function again.) It felt cathartic, restorative, like wiping last week’s (uuuuugly) slate clean. No more self-recrimination, just quiet and softness.
Spent the morning going to Boston for brunch with my three favorite guys. (Culinary luxury is always a good mood-booster.) Watched the snow blowing up Boylston Street and stuffed myself with eggs benedict and too many carbs. But no guilt. Got the kids set up with some wholesome on-line activities and retired to My Office for a nap while Mr. Wonderful wrapped up the Christmas shopping. Coasted through dinner and took the dog for a walk in the winter wonderland.
Yes, the house still needs vacuuming. Yes, I still need to finish the Christmas cards (cranked out about thirty yesterday) and get more stamps. Yes, I still need to wrap everything. But NO, the self-flagellation for my supposed shortcomings has not continued. I thank the snow.
Energy Comes Back; Organizing Skills Not So Much
For three-and-a-half years, I said “no”. No volunteering, no Class Mother position, no field-trip chaperoning, no personal projects, minimal cooking, no homemade Christmas presents. I’ve focused on the four people and two pets in the little brown house, and on holding myself together enough for my kids to keep speaking to me and my husband to be able to hold most of the weight of running the household.
Fast-forward to December, 2009. Finally feeling like a human being again, like my brain is firing on all cylinders. Able to keep track of the location of my sunglasses while simultaneously talking on the phone and switching the wet laundry to the dryer, I am getting a little full of myself. So I start saying “yes” – yes, I’d love to edit the school newsletter. Yes, I’d love to bring in a dish to contribute to the second grade’s Country of Origin feast three days before Christmas. Yes, I’d be happy to give the neighbor a ride home from the hospital on a Wednesday night after a support-group meeting and a whirlwind trip to a very crowded Target. Yes, I’d love to make six pounds of spiced walnuts to give as gifts to the teachers and service personnel in our lives. Why sure, I’d love to go to a fundraising dinner on December 17. In formalwear. The evening after a chemo treatment.
And thus a few of the juggled balls have hit the deck. Had to pass off the newsletter to the previous editor because my software skills were exceeded by the amount of work that needed doing. Failed to check with my seven-year-old on the due date of his research project and had to pull him out of bed at 7:50 on a school night to help him finish it. Got all the stuff I needed at Target and the neighbor home from the hospital but then blew parking my land barge in my teeny garage and dented the fender on the support column. Remembered to buy a present for the birthday party but forgot to make a playdate for the other kid for the same afternoon. Made it to the fancy party but blew off my boys all afternoon because I had so much to do before the sitter came that I couldn’t take ten minutes to read a book. Haven’t had time to call my dad back from a call he made to me three weeks ago.
Now I’m realizing that perhaps I’ve bitten off a little more than I can chew. Remembering that even before I got sick, I was maybe not the best multi-tasker on the planet (raging hyperbole). Remembering that this mom thing leaves little room for personal activities and ambitions, and that getting to the gym four times a week might be the pinnacle of my independent activity. Realizing that in my rush to fulfill what I though of as my neglected community obligations I had to put my homefront responsibilities on the back burner.
So I’m making no one happy right now. Family resents the fact that I’m busy. Kids are calling me a grouch. Dog hasn’t been on a real walk in four days. Laundry piling up, dust bunnies multiplying. Christmas spirit cowering in the back of a closet. Wherever I’m focusing, I’m feeling guilty that I’m not working on something else. And I’m afraid that this isn’t going to change as I get healthier; this is the standard modern mom’s dilemma. Crap.
The first thing to do is spend the day with my family NOT stressing about the projects that haven’t gotten done yet. The second thing to do is trim the fat from my obligations list. Or maybe I’ll leave that for the New Year – I really need to finish the Christmas cards. Okay, start the Christmas cards. And call my dad.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 
