“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 immediately 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 — just bad luck).
My name is Deborah Wassertzug, I am 45 years old, and I have metastatic melanoma.
I don’t have a road map for cancer. I’m the first in my family to develop a malignant one, so I didn’t know going in how I might be expected to act, and 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 narrative is apparently an experimental one for the genre.
For the posts dated November 2014, my blog co-creator was the medical marvel and horror of Prednisone, by way of medication-induced colitis, near-starvation and sleep deprivation.
For the posts dated mid-April through the end of May 2015, and also from November-December 2015, my co-conspirator was the medical marvel and horror of Decadron, by way of extreme sleep deprivation, near-manic episodes, 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 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.
Re: the pink flowery header image: Someone once told me it is beautiful. I agree. It is also the thing that is trying to kill me — the BRAF mutation of melanoma. Isn’t it something to see? (The image is from a company that works in the diagnostic realm of the disease.)
CAST OF CHARACTERS:
Me (wife, mom, writer, freelance translator, part-time academic librarian, design thinking devotee, metastatic melanoma patient)
J (husband, dad, IT guru, guitar and keyboard god, talented chef, broadest shoulders in the universe)
Young J (10), sensitive and principled and brainy, wants to
drive Staten Island Ferry some kind of vehicle be a photographer be an aeronautical engineer when he grows up (but he is going to need a better handle on fractions), adores reading and writing (almost to the exclusion of meals). Loves his little brother something fierce.
Young A (7), a feral heartbreaker, enjoys eloquence, 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 year now, and is an absolute slave to his word count. He practices piano multiple times every day. Refuses to let his big brother kiss him goodnight.
Dr P = Dr. Anna Pavlick of NYU Cancer Center.Fearsomely accomplished oncologist and Ivy MBA candidate, a trailblazer in every way, gives great hugs.
Nurse Practitioner R = Nurse Practitioner Rajni Kannan. Great & reassuring phone voice, talks like she’s your best friend because she is, lightning-fast wit, and gives great hugs. Now a mom too.
Nurse Practitioner K = 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), and — same great hugs.
All members of the medical team listed above are possessed of an unremitting sense of humor, which has earned them my undying (see what I did there?) loyalty.
(For my summary of the April 2017 AIM at Melanoma Patient and Caregiver Symposium at NYU Cancer Center, check out this post.)
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 closely, 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, and the study will combine this with a week of radiation to see if this boosts the effectiveness of the drug.
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 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! 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 to me 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, headachy, 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.
By the week of the scan, I’m beyond exhausted. On Wednesday, I plan to work a half day, then go to get 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 nurses 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.
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 in the Rockies, 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 sheafs of printouts of papers 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 and by refusing sedation, I am out of there by 9 a.m. I go back on both Decadron (mania) and Keppra (anti-seizure/knockout) – hopefully just until mid-December. (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. I’m so glad he took that chance.
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.
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.
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. My next scans are in November.
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 medical team, who sustain 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.