Because I just love living dangerously, I am a card-carrying member of the Sloan-Kettering Special Surveillance Program for women who are at a high risk of breast cancer. That means that every six months, as I did yesterday, I pop in to the famous cancer hospital for a mammo or an MRI and a little hands-on quality time with the wonderful Dr. Mangino who runs the program. I call it my Semi-Annual Sloan-Kettering Day of Beauty. I’m lucky, because I still don’t actually have cancer. And anyway, today I want to tell a happy story. It’s a story about how I got to see the future of medicine.
One of the benefits of being an “interesting” patient who has the good luck to be treated at a teaching hospital is that I have the opportunity to be asked to participate in clinical trials. Last winter, before I went to my last S-K day of beauty, I was asked if I would, in addition to getting my usual MRI, get a special kind of mammogram for this study:
“Comparison of Contrast Enhanced Mammography to Breast MRI in Screening Patients at Increased Risk for Breast Cancer.”
According to the information provided by Sloan-Kettering via the National Institutes of Health, the purpose of the study is “to determine if Contrast Enhanced Spectral Mammography (CESM) will be able to detect smaller/earlier breast cancers as well as breast MRI can.”
What that meant was that instead of just having a plain mammogram, I had an IV needle placed in my hand filled with a special dye. As it circulated into my breasts, it made the contrast between different types of tissue clearer.
Honestly, except for the slight annoyance of the initial pinprick and the tangle of the IV line, it wasn’t a big deal at all. And after it was over, a young scientist working on the study spent time talking to me and showing me some of the preliminary results of the study. He showed me pictures of regular mammograms and contrast-guided mammograms. The results were remarkably different. It looked as if the different areas of tissue were limned in dark gray in the contrast-guided mammos, whereas the regular ones looked much more pale and indistinct. I felt sorry for radiologists who had the terrifying—but boring-looking—job of trying to find suspicious pieces of matter on such a vague field of off white. It looked very easy to miss a cancerous lump in such cases. After I saw that result last winter, I went home feeling very pleased that I had been part of something bigger, something that might be useful someday.
And yesterday, I was even more pleased, because the lovely Dr. Mangino told me that the next time I came, I would be getting a contrast-dye mammogram for real. “The study results are looking great,” she said. “I wasn’t convinced at first. But I’m impressed.” At the front desk, the young receptionist told me that Sloan-Kettering is still one of the few places—if not the only place—in the nation where contrast-enhanced mammograms are done. Yet. But if they’re as good as they look as if they are, they’ll be coming. And when they do, they’ll save lives. And I’ll know I did at least a tiny little bit to help.
Do you have any interest in joining a clinical trial of any sort? You can find out more at ClinicalTrials.gov.
I have not written in this blog for more than two months. It is no coincidence that I stopped writing after I visited a highly recommended rheumatologist who spent 90 careful minutes with me, squeezing my joints, asking me questions that were similar to what my last rheumatologist had asked, and asking me what I wanted to ask. But he also did something that my other, very smart but very cautious rheumatologist had not dared to do in several years of treatment: give me an actual, solid diagnosis. He said to me, looking at my three-ring binder filled with five years of MRIs, cat scans, biopsies, doctor visits, etc., “You’ve had a LOT of testing. But not a lot of treating. I think, given your family history, given your symptoms, given everything, that you have an inflammatory autoimmune disease in the spondyloarthropathy family.”
He helped me spell it out for my journal and explained it for me. Because I have a certain blood factor called HLA B27, I am susceptible to a disease called ankylosing spondylitis (which basically turns your whole spine into one stiff unit) and several similar diseases—spondyloarthropathies. They include axial spondyloarthropathy (which has different manifestations, but can include having more arthritis all over your body), psoriatic arthritis (a combination of psoriasis and arthritis—nice!), Sjogren’s syndrome, which makes your eyes dry and other nasty things, and even Crohn’s disease—a severe intestinal problem which is called an enteric arthritis. I never knew that there could be an intestinal arthritis, but there you go. I know a lot of things now that I didn’t know, thank you Google, Twitter, and Pinterest.
Anyway, what I have is similar to rheumatoid arthritis, except that it lacks the exact blood factor that rheumatoid arthritis factor has. To have that, one would be sero-positive. This is sero-negative arthritis. But it’s not the same as osteoarthritis—which I also have in some parts of my body, such as my hips. That’s just bones wearing out and rubbing against each other. Or synovial fluid running out, or whatever. I can’t think about osteoarthritis right now.
To have a diagnosis after five years of searching for a reason for the pain and fatigue that have changed my life, and my husband’s life, so much, is a relief in many ways. For one thing, I have medicine to help treat the disease now, not just the pain and the sadness that it causes. To their credit, my doctors have believed that something real has been happening to me from the beginning, even if they couldn’t name it. But now I have two kinds of drugs that I get to inject each week, and they are starting to help. But on the other hand, I feel a shifting sense of identity as the fact of my diagnosis becomes real to me. It’s not a disease that will kill me. On the other hand, it’s not going to go away. I’m going to spend the rest of my life fighting against an enemy that wants to lock me in a stone cage made of my own body. I know its name now. And that’s good. But it’s not filling me with zest for life or an exciting new sense of purpose. Right now, it’s making me feel as if someone threw a brick at my head, and I’m just now sitting up and rubbing the bruise and going “whaaaa—?”
So dear friends and readers, please pardon my long absence. Perhaps now that I’ve told you what’s kept me away, I’ll be able to be silly, curious, and natural again. I hope so. I miss you.
Writing Prompt: Did you ever get any news that took a long time to digest?
It is 12:56. And I am waiting to find out the results of my latest biopsy. This is such a familiar feeling. Unfortunately. What is it like out to find out if your future will be scrambled? At this point, I have had so many biopsies that haven’t been actual cancer (though a number have yielded results dangerous enough to require surgery and I am permanently in a high risk zone) that I have developed certain coping skills that get me through the waiting periods and the painful tests without too much emotional scarring. I have cultivated a certain pleasant blankness that includes focusing on the moment I’m living in and doing whatever little task I have at hand, and cutting myself off from making long range plans. It is only sometimes, at unexpected moments, when the darkness completely eclipses the light and I start to sob and shake so hard that I don’t even know what I’m afraid of—is it the helplessness? is it the pain? Is it death? Or is it being tortured to death? I sob and my poor husband stands by, thinking he’s not being helpful when really, he is. By not running away, by witnessing my sadness, he most definitely is. And then, I stop, and we watch Downton Abbey, and try to figure out if Lady Mary is enigmatic or just kind of a bitch.
No biopsy will ever be as bad as the first one—until I get the one, which I no doubt will, which will let me know that the game is up and cancer is here. The first biopsy was the worst because my children were young. I could not get over the terror that I was about to betray them by dying. I felt myself not to be an individual so much as a figurehead. I was Mother. And I felt that I could not let them be un-Mothered. They needed to trust that I would be, at very least, alive. I remember so clearly feeling as if I were behind glass, watching the rest of the world go through its busy motions. Sounds felt muffled. Even my beloved husband could not reach me. Other people were alive and I was somewhere between alive and dead, in a very special zone that normal people didn’t belong to and should never see.
It is 2:00 now. The results are supposed to be here, I’m supposed to get a call. I’ve been calm. I’ve been busy. I made phone calls and emails. But now, the sky feels heavy, as if it’s crushing down on me with extra gravity. Ring, phone. Just tell me. Just tell me what my future is going to be. I’ve waited long enough. Just tell me now.
Writing Prompt: How have you learned to cope with potentially scary news?
Times Healthland says it’s putting an end to the confusion. Yeah, I know, you’ve probably been wondering. Paleo diet? Gluten free? That diet where brides-to-be were getting fed through an Nasogastric tube so they could fit into their tiny little dresses? (That’s got to be good for you).
Do you eat these foods on a regular basis? What do you think about them?
I’ll tell you mine if you tell me yours.
Black beans—heck yes! Made my own black bean soup. Lots of black bean soup. Like, three times this week with the black bean soup.
Kale—well, it’s in the garden. Do collard greens count?
Wild salmon—very delicious. Can be cooked ona layer of kosher salt in a cast iron pan with a top on. Then you brush the salt off and it’s delicious. Also good with a sweet sauce.
Walnuts—I wish. Yum!
Pumpkin—English friend just said pumpkin was revolting. But I love it. In real pumpkin pie and also in those Afghan fritters that are so good you could cry. They suggest Pumpkin Oatmean with Yogurt and raisins. I dunno—sounds a bit ungepachket to me.
Apples—OMG! I’m sitting one foot away from a sliced apple.
Blueberries—getting expensive again. L
Bananas—I have some sliced banana next to me, too!!
Broccoli—Tuesday. Dinner. Broccoli at least twice a week. Including a little bit in the garden.
Spinach—I’ll watch Julie eat it at the ChitChat tomorrow. Good as salad or an ingredient, but plain, yuck.
Sweet potatoes—also on Tuesday (very good with black bean soup, too).
Kidney beans—very nice.
Lentils—delicious when they aren’t overcooked. Hate them mushy. They always say cook them 15 or 20 minutes. Try cooking them ten. Add the bay leaf.
Eggplant—roasted some with zucchini and onions a few weeks ago. They always seem to soak up an inordinate amount of oil.
Brussels sprouts—a glorious treat when roasted properly. Glucosinolates
Tomatoes—hooray—beautiful tomatoes from the garden every day.
Whole wheat bread—or whole grain anything. Had quinoa and bulgar this week. Is gluten the evil killer everyone’s saying it is, or is that just to
Quinoa—seriously, if there’s one magic food, Quinoa has to be it. It’s good in a kind of sweet salad as well as a grain.
Steel cut oatmeal—oh hell yes, YUM!
Bulgur—You can cook it right INTO chili so it’s a one dish treat. Learned this trick from younger child who made it when he was sailing in Maine with Outward Bound. Delish.
Lean meat—the Mr. orders half a lamb and a fifth of a cow each year from some magical organic farm in Pennsylvania where happy grass-fed creatures gambol about until one day they get the axe—oops! And then are turned into tiny little paper-wrapped packages for th deep freeze. But meat certainly is a power food. And delicious. Can’t say it isn’t delicious.
Flaxseeds—a major source of guilt, as I have purchased a package of flaxseeds and a spice grinder to grind them up and release their inner goodness for a year. I also have a bottle of flaxseed I have not used. Oh so bad. But Dr. Oz says you still need fish oil for the best source of vitamin whatever it is. Oh yeah, Omega 3 fatty acid. Still need DHA from the fish.
Chia seeds—sorry, they belong on terra cotta puppies
Almonds—delicious, why have they been ignored?
Tuna—isn’t that shit full of chemicals? However, I did eat tuna sushi yesterday. Because it’s yummy.
Fat-free milk—husband has this thing after writing book about dairy where he thinks only full-fat milk is good. I do not understand his educated point of view but I’m sure he’s wrong.
Fat-free greek yogurt—Greek yogurt, food of the gods. From Aphrodite to Zeus, yogurt and honey surely must have been their treat #1
Dark chocolate—please don’t give me any more excuses.
Red wine—I think it’s a treat, but not a health food. That’s just me.
EVOO—I just had to say that to annoy husband because he loathes Rachael Ray. But yeah.
*Props to the lovely Rowyn K. for illustration idea.
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What do you think is missing from this list????