“It’s not what you think.”
I have spent my life telling people that, explaining why my last name obfuscates my family origins, why my physical appearance does not obviously place me within my ethnic group, or why I have such an easy time eavesdropping on the subway.
Now, another layer of identity has been overlaid — metastatic cancer patient — and I’m trying to figure out how that makes sense. (The first answer is, it doesn’t. It’s just bad luck).
My name is Deborah, I am 49 years old, and I have Stage 4 metastatic melanoma. Due to ocular side effects caused by targeted therapy drugs, I am (as of February 2020) no longer taking medication. But I am considered to be in long-term remission, and to have had a complete response to the therapy. A Stage 4 designation, though, stays with you until… Stage 5.
I don’t have a road map for cancer. I was the first in my immediate family to develop a malignant one (I didn’t learn until later that a great-aunt died of melanoma), so I didn’t know going in how I might be expected to act. I’ve been learning that others have their own expectations of how cancer goes, and how the cancer patient is.
I am learning there is a cancer narrative out there with which many people are unfortunately familiar. And that my own narrative is an experimental one in the genre.
Posts published November 2014 were co-created with the medical marvel and horror of Prednisone, treatment-induced colitis, near-starvation and sleep deprivation.
From mid-April through May 2015, and also in November-December 2015, my co-conspirator was the medical marvel and horror of Decadron, by way of extreme sleep deprivation, near-manic episodes, and hypervigilance. I understand I was a treat to be around. While on Decadron, I could eat, but I couldn’t shut up. My mom and my therapist, seeing me in this state, warned me to try to watch what I said and did. (I did my best.) I was also on prednisone in December 2019.
I use here images licensed under Creative Commons which I find on Flickr, or my own images. Other images I attribute to the best of my ability (I am a librarian, after all). If one of these images is yours, and you’d prefer it not be here, please get in touch. YouTube links are usually music, if you’re reading at the office. There will never be anything NSFW here aside from language, lotsa language.
Someone once told me that that pink flowery header image at the top of the blog is beautiful. I agree. It is an image of the thing that tried to kill me — the BRAF mutation of melanoma. Isn’t it something to see?
CAST OF CHARACTERS:
Me: wife, mom, writer, translator, librarian, metastatic melanoma patient
J: handsome husband, dad, IT guru, guitar and keyboard god, talented chef, home improvement enthusiast, woodworker in training, broadest shoulders in the universe
Young J: (14), sensitive and principled and brainy, railfan, wants to
drive Staten Island Ferry some kind of vehicle be a photographer be an aeronautical engineer be a writer/drummer/urban planner when he grows up, adores reading and writing (almost to the exclusion of meals) and composing music. Mad about technology, and dreams of future gadgets. Loves his little brother something fierce.
Young A: (11), a feral heartbreaker, enjoys eloquence, railfan, loves spreading out the New York City subway map and announcing every single stop to your destination — including transfers. He has been typing stories for a while now, and is an absolute slave to his word count. Practices piano multiple times every day. Understands the idea of iambic pentameter. Refuses to let his big brother kiss him goodnight, but will spend hours snuggling with stuffed animals.
Dr P = Dr. Anna Pavlick of NYU Cancer Center, my former oncologist. Fearsomely accomplished, earned a Columbia MBA in her spare time on weekends, a trailblazer in every way, gives great hugs.
Nurse Practitioner R = Former Nurse Practitioner Rajni Kannan. Great & reassuring phone voice, acts like she’s your best friend because she is, lightning-fast wit, gives great hugs. Mom to an adorable toddler. Sometimes she asks for parenting advice, which is flattering.
Nurse Practitioner K = My former Nurse Practitioner Kathy Madden. Electric blue streak in her hair, broke very bad news very compassionately, indulges my questions about the science of my treatment, does not balk when I mention random hippie healing shit (and will look it up to see if it’s safe), amazing conversationalist, and — same great hugs.
Alphabet soup of other doctors
All members of the medical team listed above are possessed of an unremitting sense of humor, which earned them my undying (see what I did there?) loyalty.
April 2013: Malignant melanoma, resulting from childhood sun exposure (I am pale and got sunburned) is discovered during a biopsy of a spot on my back. (The spot had been biopsied once before, but “turned bad.”) I have surgery, and the tissue removed shows evidence of melanoma in transit (cells on their way to do bad things). A sentinel lymph node biopsy shows no lymph node involvement.
May-June 2013: I have a short, intense course of radiation. I spend the summer with a nasty oozing burn mid-back that takes ages to heal. When people hug me it hurts. I stop complaining, because I need the hugs. I will be followed for five years, and then given the all clear.
July 2013-August 2014: I am followed with scans every six months. The scans are clear in the fall. Clear the following February. Things gain momentum. I start thinking I’m in the clear.
September 2014: I go for another scan. I show up the following week for the results. I go alone. I’m ready to hear I’m fine and then go do some shopping.
Dr. P isn’t there, she’s at a meeting, she deeply regrets her absence. Kathy says, We found some spots on your lungs and some swelling in your lymph nodes. I call my husband to come, and I sit there angrily freaking out that “this shit is trying to kill me!”
September-October 2014: Following a lung biopsy (complete with an overnight hospital stay, after my lung collapses as a result of the biopsy), I am enrolled in a research study. I will be treated with the current industry standard metastatic melanoma drug, ipilimumab (Yervoy), and the study will combine this with a week of radiation to see if this boosts the effectiveness of the drug. I get the radiation up front, which proves to be a very lucky break.
November 2014: After two doses of ipilimumab, my treatment (and life) is derailed by serious ipilimumab-induced colitis, and I am disqualified from receiving any further doses of ipi, and dumped from the research study. I lose 16 pounds over a period of three weeks. I go on Prednisone (which causes major insomnia) and receive two Remicade infusions, to quell the diarrhea. I am magically better by Thanksgiving, and have the best and biggest holiday meal of my life, surrounded by relieved and bemused family members.
January 2015: I get the results of a CT scan – it shows some tumors on my lungs have disappeared, and others shrunk significantly (the largest one shrinking from 1.3 cm to just a few millimeters). I have an MRI of my brain due to some headaches. Nothing appears on those images.
February 2015: I get a job in a library! My first full-time job since leaving librarianship to be a stay-at-home mom in December 2007. It’s temporary, but I am so, so happy to be back in my field. It’s like riding a bike, everything comes back immediately. I even enjoy the hour-long commute.
April 2015: I’m in my third month of my new job. I go for a CT scan to check in on the lungs. They don’t do an MRI of the brain, because they feel like that can wait until July. In the couple of weeks before my scan, I’m feeling tired, headachey, exhausted, fatigued. For one week, I even manage to exercise almost every day at lunchtime. I survive, but it doesn’t improve my energy level or stop the headaches.
By the week of the scan, I’m beyond exhausted. On Wednesday, I plan to work a half day, then go to get my scan results. That morning, for the first time, I notice I have difficulty finding words while I am meeting with a student. I don’t mention it to the oncologist, because I think it is just nerves about my scan. Also, when I see my oncologist and the nurse practitioners literally jumping for joy outside the exam room, I figure they have good news. In fact, they had the best news ever – NO EVIDENCE OF DISEASE. Nothing left on my lungs. Tumors completely GONE.
I mention I’ve been headachey and tired, but I choose not to mention the language problem. By the next morning the speech/language problems are worse. I actually attempt to use sign language (which I don’t know) in a meeting with a student. I consult with Nurse Practitioner R on the phone and, after meeting a friend for lunch, because I am stubborn and don’t want to break our date, I make my way to the hospital, where I get a CT scan, then an MRI. On the MRI they find lesions (tumors) on my brain, one large enough (3 cm) and in the right place to be consistent with language issues.
They keep me overnight in the hospital, with neurologists checking in at odd intervals. I answer all of their questions correctly.
By mid-morning, with Dr P exerting her influence, I get out of the hospital, and head back to her office. I’m greeted with warmth and strength and conviction. Gamma knife surgery is on the table, but first, I will take a targeted therapy drug, dabrafenib, that penetrates the blood-brain barrier, and which happens to be a match to the genetic mutation of the tumor which they sequenced after the lung biopsy back in September. I start taking the pills immediately, in addition to Decadron (steroid to reduce inflammation), and Keppra (anti-seizure medication). I decide to quit my job, because it is important to me to focus 100% on getting well.
Within just a few days on the targeted therapy, my speech problems start to go away.
May 2015: After I take dabrafenib for one month, I have a new MRI. The results are astounding – from the initial dozen lesions they had found in April, there now remain only a few significant ones. The largest one, that was affecting language, has shrunk from 3 cm to 1 cm. I’m in awe.
I do take a week-long break from dabrafenib, though – my blood work came in at the end of my appointment, and it showed increased liver function that can be a result of the drug. After a week, the numbers are normal again, so it’s back to the wonder drug.
June 2015: I get my ride in the gamma knife machine, which I treat as an adventure, despite the very long day it entails. My neurosurgeon is Dr. Douglas Kondziolka of NYU. I’m the last of four patients to be treated that day, because I have not one, not two, but NINE small spots on my brain requiring the zapping of gamma rays. I go off steroids shortly after the surgery. My personality changes back to normal, thank goodness, although the sheer mania of being on Decadron is a memory I’ll always cherish.
We take a family vacation to Colorado three weeks after my surgery. While walking is painful due to the thickening of my foot soles (another weird dabrafenib side effect), I am absolutely fine to go horseback riding, so we do… twice!
July 2015: A new MRI shows all of the brain tumors shriveling. A new CT scan shows no new cancer and the lungs still fine!
September-October 2015: MRI of my brain shows continued shrinkage of tumors, some appearing as just faint shadows. I also develop iritis/uveitis, a known possible side effect of the cancer medication, but by far the least common one – my oncologist has only had one prior patient develop any eye effects, and not like mine. Only 1% of patients in the trial had ocular side effects. My ophthalmologist is so fascinated he asks for permission to talk about me during grand rounds, and I am referred to his colleague, a retina specialist, who finds my left retina swollen and prescribes a six-week course of eye drops. I am now the patient who shows up to appointments with sheaves of printouts from medical journals, because I can no longer assume they have ever seen a case like mine.
I also begin combination therapy, taking dabrafenib with another targeted drug, trametinib (Mekinist). The two drugs in combination tend to mitigate each other’s side effects.
November 2015: CT scans are pristine and wonderful. MRI showed only one area of concern – a tumor that was small but bleeding in September suddenly showed up larger and with swelling. Due to the limitations of imaging, only blood is visible. I have the MRI on Monday, and by Wednesday morning at 5 a.m. I am heading back to the hospital for my second gamma knife surgery, on just one spot this time. I’m an old pro by this point, and by refusing sedation (because I know what to expect), I am out of there by 9 a.m. I go back on both Decadron (mania) and Keppra (anti-seizure/knockout) temporarily. My Decadron dose is doubled when I see the retina doctor and he finds that, despite my retina being totally fine and no longer swollen, now both my optic nerves are swollen.
Mid-late December 2015: I see the retina specialist and he finishes with me – my retina looks good and I’ll follow up with my ophthalmologist, Dr D, as my vision hopefully clears. The following week I have another MRI and visit with Dr K. The spot he was concerned about and zapped with gamma rays in November is officially no longer of concern – the swelling and bleeding are both gone. Seeing the progress, Dr K confides that he was pretty worried about me, and that doing gamma knife again instead of cutting was “a gutsy move” on his part, and that many of his colleagues had advised otherwise. I’m so glad he took that chance. I taper off Keppra and Decadron.
Late February 2016: MRI and CT scans are great, with the former showing particularly dramatic results following the gamma knife from November.
Mid-April 2016: I have a brain MRI a few weeks earlier than anticipated, because I am suddenly extremely dizzy and nauseated. Nothing of concern is found on the MRI. I see my primary doctor for a change, and she decides it is something pretty pedestrian – dehydration.
May 2016: CT scan is clear. I get stronger every day as I train for the Answer to Cancer bike ride, which will raise funds for cancer immunotherapy research.
June 2016: J and I ride for cancer immunotherapy research. I don’t fall off my bike. It is a beautiful day and our donors are generous and we raise over $8700 for research that will have a real impact on the lives of cancer patients.
July 2016: Good brain MRI, all spots are stable or shrinking. Dr K shows my images to his colleagues as an example of how things should work. I feel very lucky that they have. Iritis flares up while we are in Italy (most likely because I’m taking just Tafinlar, not the combination, since Mekinist must be refrigerated). My quest to find the right eye drops is epic and retrospectively hilarious.
August 2016: CT is clear!
September 2016: Iritis again. I finish up my Italian eye drops. I’m getting better at recognizing the condition and treating it before it flares up too badly. My ophthalmologist and I make a good team.
October 2016: MRI is good. No new spots. Dr K says he’s starting to collect “too many slides” showing progress in treatment with targeted therapy and gamma knife. I learn that I have now surpassed the median survival rate for brain metastases of melanoma, more than fourfold, thanks to this treatment. I start to realize that I am creating new survival data, each and every day I am alive.
November 2016: CT scan is clear, and I spend more time talking with Nurse Practitioner K about the election than I do about my health. I do ask whether I will be on the meds indefinitely, and she confirms this. (If it ain’t broke, don’t fix it.)
January 2017 MRI and February CT are both clear. Nurse Practitioner K asks Dr P on my behalf about starting to talk about stopping meds. It is premature, but she said once we reach two years from my last gamma knife — meaning this November — we might reassess the dosage.
May 2017: CT scan is clear, MRI shows all spots stable, except one which seems to have faded or shrunk.
August 2017: CT and MRI both still good. In recognition of this, I will start taking Tafinlar and Mekinist every other day (instead of daily), and I will drop the six-week followup appointment.
November 2017: MRI & CT both fine. I survive scan day while recuperating from pneumonia. I will continue to take Tafinlar and Mekinist every other day, and have another brain MRI in three months, but my CT scans now drop to every six months (with a checkup at the three month mark).
February 2018: MRI is fine. My father is no longer here to get the news.
April 2018: Five years since my initial diagnosis. I am still alive and well. I am grateful beyond belief.
May 2018: CT & MRI scans both stable/clear. I get the name of a medical oncologist closer to my new home, with a heavy heart, even though I am hoping to somehow stay with Dr. P. and her wonderful crew.
August 2018: Two weeks after moving to Maryland, I get a migraine. I call Nurse Practitioner R to ask if taking Excedrin would be OK for me. Because I am me, I wind up in the ER for eight hours, awaiting a brain MRI. The results, as read by the hospital and then confirmed by Dr K, were all good. But I still am not cleared for Excedrin.
November 2018: I achieve three years of no new cancer since my last gamma knife surgery, and four years since recovering from treatment-induced colitis. And I have my first Maryland CT scan, which shows nothing of concern. I get the results via phone while shopping at Costco.
Mid-December 2018: I have my first MRI in my new hometown. I am not fond of the policy forcing all patients to wear gowns in the machine. I am not sure when I will get results, and really miss Dr. K. But I get my good results via message while buying some mushroom barley soup a few hours later. It tastes delicious.
April 2019: I fit my MRI in at the beginning of a long day of work and airport retrieval. I spend more time talking with the technicians about why they do things the way they do here (which I realize is actually, “Why don’t you just do everything exactly as they did at NYU?”) than I do thinking about what is at stake. By 1 p.m. the portal announces my results are up. I get a message through the portal from NP Megan shortly after. All continues to be well with my brain.
June 2019: I sail through another CT scan of my chest, abdomen, and pelvis. Unremarkable results… except for the part about arthritis in my spine. Old age! I get to suffer indignities of old age! I am even grateful for that.
August 2019: Iritis plagues me for about a month starting in late July, and I take a longer than usual break from my meds. But then there is another unremarkable MRI scan of my brain! (Sometimes, unremarkable is just the thing you want to hear about yourself.)
December 2019: Another unremarkable CT result. I have been in long-term remission since November 2015. My eye condition worsens, however, with the onset of optic neuritis when I switched from Tafinlar/Mekinist to Braftovi/Mektovi. Attempts to get that under control with prednisone are ongoing. I have a brain MRI that shows an “area of artifact” and for about an hour I am sure I will die, until I learn that could be anything at all on the image, not just a tumor. I take a long break from cancer meds and ponder the uncertainty of life without them.
January 2020: I am referred to a radiation oncologist as a result of the inconclusive MRI. She isn’t overly concerned and has me schedule the next brain scan for early April. She’s a fantastic and collaborative doctor, which puts me at ease.
My eye condition finally resolves and I begin the third line targeted therapy combo which I had yet to try, Zelboraf/Cotellic. I’m cautiously optimistic (as of this writing I have been on the combination for a full week… and can still see).
February 2020: My eye inflammation begins to flare up again. It appears no combination of targeted therapy agrees with my eyes. After consulting with colleagues worldwide, Dr. L informs me that I will suspend my treatment with targeted therapy. I will have scans and frequent followups, but no drug therapy unless there is disease progression. (I never tried anti-PD1, so that immunotherapy option would be on the table should the need arise.) I’m nervous and apprehensive after being on targeted therapy since 2015.
April 2020: The month of April brings two cancerversaries for me, my initial melanoma diagnosis in 2013, and the sudden appearance of nine brain metastases in 2015, just a day after learning that my lungs showed no evidence of disease. So you might imagine that having my first set of scans since stopping drug therapy six weeks ago could be a little nerve-wracking, even in the absence of a global pandemic. But I had my CT and MRI scans, under heavy medical surveillance (I had my temple scanned for fever before entering the office), and both were fine. I’m so lucky. Dr. P, my new radiation oncologist, delivered the good news by video call. (It was a call she said she looked forward to making.)
July 2020: Scans are fine. Good thing, considering the state of the rest of the world. I walk 5K to raise money for the Melanoma Research Foundation, and friends and family pitch in and donate over $1300 in just four days. I’m grateful to be able to walk, but I’m sad about the people who are no longer around to walk. We’ve come far, but there is further to go.
October 2020: my scans are still fine. I contribute to public awareness of the importance of knowing your BRAF mutation status by writing an essay for the MRF.
December 31, 2020: I tempt fate by scheduling my scans (slightly ahead of schedule due to some medical issues I’ve been experiencing) on the very last day of the Very Worst Year. In spite of this, the results are fine. Hopefully this augurs well for the new year and for the rest of the world, too.
January 2021: I give five vials of blood for a ctDNA test, which will measure the amount of circulating tumor in my bloodstream. It’s still experimental and I don’t know anyone who’s had it before. Results should come the day after the inauguration.
Stay tuned as more exciting things happen. I am here to document the medicine, and the minutiae. The minutiae are everything.
I dedicate this blog to: cancer chroniclers who have come before me, wherever they are today; my NY medical team, who sustained me with their expertise and their humanity and their compassion and willingness to talk to each other and learn new things; and to my family — we are all learning as we go.