Fellow breast cancer survivor and advocate, host Erika Silva, aka @yourpinksis, and I talk about letting cancer disrupt your life, utilizing your position as a patient to build a trusting and open relationship with your provider, and the power of mindset in parallel with medicine in cancer treatment.
Listen to the full episode HERE or on your preferred podcast app.
And be sure to like and follow @yourbreastfrienddiaries on Instagram
Like (doctor) Mom, like (doctor) daughter. We did it for each other.
It has been one week since my 2nd dose of my (Pfizer) COVID-19 vaccine. The side effects I experienced were limited to about one day of arm soreness, which I am so grateful to report as one of the first cancer patients to have received a vaccine.
ICMYI my first dose on December 21, 2020 ->
I was fortunate to receive it from via my employer at one of the hospitals I work at. Like many ER doctors, although I work at ER’s that are part of a hospital, I am not a employed by the hospital. Rather, I work for a small democratic group of doctors that is contracted by the hospitals I physically work in. Some ER doctors work locums tenens (think travel doctor) and are also not employed directly by hospitals.
Since the COVID-19 vaccines have been dispersed primarily to hospitals for their employees, some of these ER doctors are facing challenges in accessing the vaccine despite meeting criteria for “1A” category of individuals who should be vaccinated right now because they are not directly employed by the hospital. In this regard, I feel additionally fortunate to have had access to the vaccine, based on my group’s relationship with the hospitals.
Furthermore, my experience with the rollout of the COVID-19 vaccines at my hospital was smooth. Out of a lottery of over 5,500 employees, I received the 98th position and was able to easily schedule my appointments. The day of administration process was also efficient. I showed up, got my vaccine and was out within a span of 10 minutes.
Deciding whether to accept the vaccine or not, though, was a more arduous task. Regardless of my belief in science, in this situation I had to consider the risks of subjecting myself to the unknown. We can make educated guesses on who may or may not be a candidate for the vaccine but as many things in medicine, nothing is definite. There’s theory and then there’s reality.
Having received one of the earlier slots in my health systems COVID vaccine lottery, I had about 3 days to decide. Coincidentally, in those days the American Society of Clinical Oncology (ASCO) and Infectious Diseases Society of America (IDSA) held a webinar on the “COVID-19 Vaccine & Patients with Cancer ” with a panel of experts in both fields.
Regarding cancer patients receiving a COVID-19 vaccine, American Society for Clinical Oncology (ASCO) has released the following recommendations (edited for brevity):
Should people with cancer be vaccinated against COVID-19?
“At this time, patients with cancer may be offered vaccination against COVID-19 as long as components of that vaccine are not contraindicated.”
-
Should people undergoing active treatment for cancer be vaccinated against COVID-19?
”At this time, patients undergoing treatment may be offered vaccination against COVID-19 as long as any components of the vaccine are not contraindicated.”
-
Should cancer survivors be vaccinated against COVID-19?
“Cancer survivors may be offered vaccination against COVID-19 as long as any components of the vaccine are not contraindicated.”
-
Are there people who should not be vaccinated?
“At this time, only those with contraindications to a specific vaccine component should not be offered vaccination with that specific product.”
-
The full ASCO COVID-19 Vaccine & Patients with Cancer statement, including the webinar with expert panel discussion can be accessed here -> http://bit.ly/ASCOCOVIDVaccinePatientswithCancer
It honestly didn’t tell me much I didn’t already know, but these were one of the first more formal recommendations regarding the COVID-19 vaccines and cancer patients, specifically, and at least provided a guide for a discussion for providers to have with their patients. I can’t tell you whether you should get the COVID vaccine or not. This a personal decision which requires and individualized approach. I encourage you to stay informed and stay healthy by having an open conversation with your physicians (as I did with my oncologist) about your questions and concerns to help you make your decision.
**You can also refer to my IG stories “COVID-19” highlights for reputable sources breaking down the latest COVID data and what it means for patients.**
I’m a list-maker and I turn to lists often, including when making major life decisions. A simple pros and cons list helps me break down complicated or important decisions. In medicine, when deciding whether to pursue a particular therapy or not, we create a similar list with risks and benefits. Here’s an example of items from my risks vs benefits list I made when deciding whether to take the COVID-19 vaccine.
I ALSO discussed the following considerations with my oncologist:
Glad to say, so far so good! My experience will be one example of the Pfizer COVID-19 vaccine administration in a person recently on chemotherapy. Stay tuned for updates.
Kavita Jackson, MD
Just released!
Listen to the whole episode on your podcast app by searching: Black Cancer
We all know what 2020 was like. So much loss- of health, of happiness, of livelihood and loss of lives. Specifically, 1.81 million lives lost worldwide, as of today, due to COVID-19.
I guess I’m fortunate to feel like I’ve gained more than I have lost this year. But some of my losses are worth recognizing:
🖐🏾 Bye boobs
🖐🏾 Bye cancer
🖐🏾 Bye self-doubt
🖐🏾 Bye self-hate
🖐🏾 Bye fear
The “me” exiting 2020 is drastically different from the one who walked into it. Ironically, I am the exact same weight as I was this time last year. Even with the fluctuations thanks to steroids (ick) my net change is 0lbs. But that’s just a number. A number that in no way encompassess my body’s experience in 2020.
I have many vivid memories of moments of this year that I’m not fond of but that I know I’ll never forget, like, the dense click and vibration of the biopsy needle coring out pieces of my body or understanding the meaning of the Red Devil or finding my first bald patch, non-confrontationally developing on the back of my head. And, of course, So Many Needles. But these are the memories that have shaped me into the empowered body and mind entering 2021.
I’m also going into the new year with a new primary care doctor. My previous one, the one who I was with when I was diagnosed with breast cancer has since graduated and moved on. I knew from the beginning she was a fellow and I’d only be able to be her patient for less than a year, but 1) we instantly clicked, I appreciated her line of thinking and her bedside manner and 2) I wasn’t expecting to become a patient the way I ultimately became one this year.
You know what I’m talking about. Technically, we’re all patients to medicine in some form, but a subgroup of us get stuck with a stickier patient label. We inherit a long-term entanglement with doctors and hospitals and medicines and treatments (and their side effects) and all that jazz. Our medicine cabinets and kits, pill boxes and carriers look a little more “colorful”. Our speed dials include a variety of specialists (I had to create a separate list to sort my professional physician contacts from my personal providers) and we may have hospital bags prepped and ready to go.
This year, I experienced the hospital in a way I never had in the last 8 years. I no longer navigated the floors with my head held upward, my long white title hugging me snuggly and my most trusty instrument, my stethoscope, resting on my shoulders. I no longer felt at home. I no longer strode down the halls, nodding my head in camaraderie to colleagues passing by and demonstrating my knowledge of the intricate layout of the hospital to lost visitors.
The first time I shuffled into the radiology center downtown for my mammogram my eyes were fixed to the ground and shoulders sunk trying to be as invisible as possible. “Don’t look at me.” Turns out, I was in the wrong location…
Now I was lost.
The receptionist kindly gave me the address to the correct building. Per google maps it looked like an easy 0.4 mile walk, so I headed out. When I arrived at the right intersection, I circled and circled and could not for the life of me find the building. I consider myself pretty visually-spatially ept, so my frustration in not being able to follow these simple directions was mounting. I really wanted to find the building but it’s like my subconscious was simultaneously feeding me valid excuse after excuse of why I could not make this mammogram. Maybe it knew what was in store.
I ended up walking down to the main hospital (a 3rd location), then back to the intersection twice, ultimately walking about 1.5 miles until I found the center which was further down one street than I expected so I could not see it from the intersection. Regardless, I mosied in there and that’s how my relationship with hospitals started as a patient.
—
In my first visit with my new primary care doctor recently, I chronologically spewed out the notable events of my medical history, ending with “Well, that’s all about me.” To which she responded, so gently and genuinely,
“No, that’s not all about you. Your health is one part of you. Tell me about the rest of you.”
Mic Drop Please, right? This is the message I want to leave all of you, especially the “patients” like me – your health and your business in your doctors office or hospital does not define you as a person.
Goodbye 2020,
Kavita Jackson, MD
Due back to work this month, I have been feeling anxious about my return during the pandemic and after being away for so long. This has been the longest break I have had from medicine ever. I was worried about how I’d transition back.
Being an attending was really hard for me. Much harder than I expected. I left residency confident in my practice and ability to tackle any case in the emergency department. Yes, some cases are easier to manage than others, and some I enjoy more than others, but I knew that, regardless, I could handle them all.
But when I walked into my first shift as an attending it felt like my mind was blank, void of the last 8 years of medical training. It probably didn’t help that the first patient I saw as an attending was unexpectedly critically ill. Looking back, I laugh at “unexpected” because the epitome of my job is to expect the unexpected.
Since I was brand new as an attending and also to the hospital system and electronic medical record, I picked up a triage ESI level 3 patient to orient and ease myself in. For context, ESI stands for emergency severity index and is used to triage patients presenting to the ER based on their presenting concern (e.g., chest pain), vital signs, like heart rate, blood pressure, and oxygen saturation (called vital for a reason!), and brief evaluation by a triage nurse. ESI level 5 is a less urgent complaint like a mild rash or medical refill and an ESI level 1 is a patient who requires immediate attention by a physician to live, such as a patient in cardiac arrest or with a severe asthma attack. In the emergency department, due to the time sensitive nature of different presentations with some being more emergent than others, patients are seen in order of their ESI (Level 1 and 2 being highest priority) not the order in which they arrive at the ER.
So back to my first patient as an attending, who was a young gentleman presenting with a simple complaint of a cough and had normal vital signs (ESI 3). From the triage note it sounded like a straightforward case of an upper respiratory infection or URI. Before seeing him, I reviewed his chest xray which had already been performed and noticed that his heart size was questionable on the larger size. Erring on the side of caution, I requested that the nurse connect him to the cardiac monitor and obtain an EKG as I walked over to see him.
He was a larger man in his 30’s and otherwise appeared well and comfortable. He described having a nonproductive cough and difficulty breathing which was especially worse at night but that he occasionally felt random periods of shortness of breath during the day. His exam was what we call unremarkable, meaning no obvious abnormalities relevant to his complaint. After my evaluation, I decided he didn’t clearly fit any diagnosis but was reassured by his vital signs and how well he looked. I continued with my plan to obtain an ekg and some bloodwork to evaluate his heart all while trying not to badger myself for ordering potentially unnecessary tests for an otherwise healthy young man with no cardiac risk factors who looked good.
While reviewing his normal EKG at my computer, I heard another physician yell, “Room 12 is in V tach!!” Oh wow, I thought, I’d offer my help but I probably wouldn’t be very helpful since it’ s my first day and I don’t know where anything is, or who anyone is (other than my one patient’s nurse), or how to do much. That’s why I’m only seeing one simple patient with a cough.
“Dr. Jackson, isn’t room 12 yours?” a colleague nearby asked. Oh Shit! It was my patient. The ventricles of my patient’s heart were pumping away abnormally at 170 beats a minute, splaying wide, flat topped, waves, rapidly across his cardiac monitor. I jumped and ran to his room. Thankfully, he was conscious and with a pulse. Even better he was stable enough to tell me, “Hey doc, I’m having that breathing problem right now.” Time for action (Kavita, you got this):
2nd IV in process, code cart on the way and amiodarone being drawn up
I held his left hand briefly, “Sir, your heart appears to be beating abnormally and dangerously fast. This is likely the cause of the symptoms that brought you to the ER today. I don’t know why it’s doing that but right now I need to focus on stabilizing your heart rate and then we’ll get you seen by a cardiologist. Plan to stay at least the night”
Defibrillator pads on, amiodarone going in
.
No change. Okay, “lidocaine” “Lido’s up, doc.” Lido going in…
.
.
No change. I see… “procainamide” “Procaine’s up, doc” Procainamide going in…
.
.
.
No change! (What am I missing??? At least blood pressure’s ok.)
Oh no… blood pressures dropping… (Shit, shit shit!)
Alright, here we go! Fentanyl, versed, and get cards on the line. “I’m sorry sir, I’m going to have to give you heart a little spark to get it to behave”
“Meds in”, charging to 100 Joules
CLEAR, shock delivered…no change (Dang, c’mon!!!)
“Again!” Charging to 200 Joules
CLEAR, shock delivered……….HR 160bpm…140bpm (Phew)
“Run the blood pressure cuff, please.”
Okay the heart rate is starting to slow down, blood pressure is improving, and cardiology is here on the phone calling for the cath lab to be prepped. And off my patient went.
A person in my life that I will never forget- my first patient as an attending ER physician. I’ve been thinking about him and our experience together about 1 year ago. Preparing myself to return to my chaotic, unpredictably, but exciting and rewarding professional home. Battling my anxieties of having forgotten how to do what I do and concerns about being able to withstand the frontlines with the same rigor and bravery as my colleagues.
Thinking about the patients that have impacted me more than they know as a doctor and a human reignited my desire to be back in the ER doing what I do. The professional mission of the last 15 years of my life coming back to fruition. I am more prepared than ever to connect with my patients to be the best doctor I can be.
But there has been a change in plans. I met with my oncologist this week, to get my return to work release only to find out that I am no longer cleared to return to the emergency department. With my immune system in its current state and with the pandemic in its current state…Doctor’s orders.
Instantly, I was flooded by so many emotions and also somehow devoid of feeling. My body burned up like it had been lit on fire, yet I was shivering. Or maybe I was shaking? So many questions yet I couldn’t seem to form a coherent thought.
“I trust you and if that’s your recommendation, doctor (aka amazing woman who cared for me with excellence and always considered my best interest), I will follow it.”
“It is my firmest recommendation.”
With the play button on my livelihood stuck jammed, the taste of my pre breast cancer life that had greeted me, enticingly, now replaced by bitterness. This news in no way compares to receiving the news that you have cancer, however it is reminiscent of how it felt when my life was flipped upside down by the unwelcome war that breast cancer started in March. Just as unexpected, just as confusing, and dredging in the same amount of uncertainty into my life.
I didn’t expect this and now I am lost. Without direction or clear purpose, things I’ve always had. No matter what the situation is, I’ve only ever operated with a goal in mind. Go to medical school – check. Have children – check. Win against breast cancer – check. Well now what?
Many of you may be thinking, “What is she so upset about? I’d be thrilled if I didn’t have to go to work.” Like studying your ass off for a test that ends up being cancelled. Sounds like a win, right? And maybe you’re right, maybe I should be relieved and rejoicing. Part of me also thought I might feel that way, but I don’t. Not after what I have given of myself to be an emergency medicine physician. I’m not ready to stand down, I just got fired up to fight the COVID fight. I feel especially ashamed that I cannot show up for my patients and colleagues in a time when we are most needed.
I should be there but I’m stuck on the sidelines, for now.
Kavita Jackson, MD
Last week I gave a virtual lecture on breast cancer basics and how to perform a breast exam to doctors in India participating in the Global Association of Indian Medical Students (GAIMS). I had to tap into my creative side to best demonstrate the breast exam via Zoom and thanks to my daughters extensive Minnie Mouse collection and love for balloons, Medteacher Minnie was born (scroll right to the 3rd image to see her make her debut!). With her by my side we had an engaging and successful session. It was so inspiring to connect with these young physicians actively seeking to improve breast health of their patients and themselves that it prompted me to finish this blog post that I abandoned half finished months ago.
When I was diagnosed with breast cancer in March of this year, part of my shock and disbelief stemmed from not ever having seen or having known anyone with breast cancer that looked like me. Through my medical training, I have seen women (and men) of all ages and color with a breast cancer diagnosis, but never an Indian person. It’s also not something that I had ever heard even being discussed in my Indian community. I didn’t realize it was a thing. Somehow, this must have contributed to my unconscious thought that Indian people don’t get breast cancer, which is exactly what I said out loud when I was diagnosed.
Obviously I was wrong. I don’t like thinking it was from a place of ignorance because of the negative connotations associated with that term and any additional negativity from myself in the early months of my diagnosis and treatment would not have served me well. Rather, it was just from not knowing, confounded by the Indian cultural stigma surrounding illness and diagnoses like breast cancer. If I felt like this as a physician and now a breast cancer survivor, imagine how many Indian people around the world are as uninformed (maybe not and it’s just me!). Imagine how other Indian women with breast cancer, like me, are feeling – lonely, scared, confused, betrayed. So, I started to dig for insight.
We know that worldwide breast cancer is the most common cancer diagnosed in women and the most common cause of cancer death in women (1,2). This is true in India as well, however, only recently since cervical cancer was the most common cancer and the most common cause of death from cancer prior to 2012 (3,4). In the last several decades the incidence of breast cancer in India has increased by more than 6 times! In 2018, there were 162,468 new cases of breast cancer in India, of which about HALF (87,090 to be exact) died (3).
Interestingly, breast cancer appears to be more common in the younger age groups in India, with a large number of women being diagnosed under the age of 30 years (5). This felt alarming to me since I was diagnosed just over 30 years of age. My oncologist actually has a theory about this based on her experience of having seen a notable number of young Indian women with breast cancer. She noticed that these patients had male predominant predecessors (brothers, uncles, etc) and suspects there may be an undiscovered genetic mutation being passed down in these families that is silent in men but increases the risk of breast cancer in the females. This is all speculation and there is no evidence to support this theory but I thought it was a fascinating idea.
Furthermore, a recent study by Thakur, Bordoloi, & Kunnumakarra, looking at worldwide data on triple negative breast cancer aka TNBC (the specific type of breast cancer I had), found that India has the highest reported rates of TNBC (6). Compared to the mean of 15% (15% of breast cancers are of the TNBC type), in India TNBC accounted for almost double the percentage of breast cancer diagnoses. Similar findings have been cited in other studies, too (7,8).
In India, for every 2 women diagnosed with breast cancer, 1 will die (9). Contrast this to the US, where for every 5-6 people diagnosed with breast cancer, 1 will die (10). Wow, right? Maybe not shocking to those who think this an expected difference between a more developed versus a less developed country and you’re right, but this face doesn’t make it less heart wrenching to me. Specifically, the disparity seems to stem from poor awareness of breast health leading to women presenting with later stage disease at diagnosis as well as a lack of adequate diagnosis and treatment facilities (11, 12, 13, 14). Add stigma and misconceptions about the disease and a privatized health system which is not utilized by most marginalized communities who seek care from alternative providers and you can start to grasp the complexity of this issue. Unfortunately, all of these factors contribute to women being diagnosed with breast cancer in later stages which we know is associated with higher mortality (12). For example, people diagnosed with breast cancer confined to the breast (localized) have a 99% 5 year survival rate compared to a 27% 5 year survival rate in those that are diagnosed when breast cancer has spread (distant disease) (13). This highlights the benefit and necessity of earlier diagnosis of breast cancer, a message that has been loud and clear in the US for decades but still needs to grow more widespread in India (many organizations working on this!).
Having taken in all of this information, I realized that I am not an outlier, an exception, or alone, rather, I am representative of a truth. Indian women are more affected by breast cancer than I had known. Tackling the paucity in breast cancer screening programs and diagnosis and treatment centers in India seems like a daunting task especially, for one person. I know there are very smart and capable public health organizations actively working on this venture. However, given that breast cancer awareness is lacking in India I can make a greater impact as an individual through simple teaching. Thanks to virtual platforms I can easily teach breast cancer basics and the breast exam to women all over India and through education empower them. So I look forward to continuing to spread awareness in this manner (as I will be with another group in India this week).
Please contact me via the contact form if you are interested in having me speak for your organization or collaborating in another way to spread breast cancer awareness. Also check out the following organizations that are excellent resources regarding all things breast cancer in India:
Kavita Jackson, MD
In the OR I closed my eyes as me, like I’ve always known myself to be. A blink later – actually, about 5 hours later – I opened my eyes to my new body, with enough attachments that I felt like an octopus trapped on land.
My chest was covered with an activated charcoal dressing over which a wound VAC (aka wound vacuum assisted closure dressing) was placed. There is one wound VAC dressing on each breast, with a tube from the center of the dressing which extends out to a portable vacuum unit which creates negative pressure under the dressing allowing the dressing to kind of suction onto my skin. Wound VACs promote wound healing by:
The wound vac isn’t uncomfortable, rather, I feel it feels supportive, like it’s holding everything together. Since they cover the incisions, I don’t feel any incision sensitivity or irritation from clothing rubbing against incisions (something I had after my oncoplastic reduction). And it’s helping my wounds heal. So, I can’t say it’s really bothering me.
The only issue might be how I’ve accepted it as a part of my body… The other night, as I was getting out of my bed to use the restroom, I looked over to my portable vacuum unit and said out loud, “let’s go!” Then quickly checked myself – the vacuum unit is not your daughters, it is not your dogs, and even though it hums and beeps, it is not alive and it is not part of you. It’s not going to do anything on it’s own. C’mon Kavita, pick it up and take it with you.
Just below the edges of the wound VAC, several inches inferior to my armpits, I had Jackson-Pratt drains (aka JP drains) – 2 on each side. The tubing of these drains extend into my chest and snake out to connect to a small bulb (with a one way valve allowing fluid into the bulb but not backward into the tubing). Negative pressure is created in the bulb by squeezing the bulb prior to sealing it, each time the fluid is emptied. The purpose of the drains is to remove the serous fluid and blood that naturally accumulates in the chest wall tissue after surgical manipulation and to prevent formation of hematomas and seromas which can impair healing and lead to infections. Each day the drains need to be stripped from where they insert in my skin, down to the bulb and then the fluid in the bulb is squeezed out and discarded.
Oh, and I had a foley catheter in! Fortunately, placed after I was already unconscious in the OR and removed early post-op.
My biggest fear going into the procedure was post-operative pain. At the recommendation of my surgeon and after discussion with my anesthesiologists, I elected to have paravertebral nerve blocks placed. It is similar to an epidural but rather than being placed midline or anywhere near the spinal cord, a very tiny tube is placed on either side of the vertebrae where the nerves that provide the sensation to my chest exit from the spine. They were placed at T4 or at level of the 4th thoracic vertebrae for my mastectomy.
The placement involved assuming the position like you would for an epidural and was easier than having an epidural placed simply because I wasn’t pregnant or contracting! There were two small pricks in my back, a brief twinge from local anesthesia and then all I felt was some pressure and movement as the blocks were placed.
These small tubes ran from my back to two fist sized balloons of medicine (ropivacaine) that provided a continuous infusion of medicine for about 6 days. The balloon balls had some weight in the beginning when they were full of liquid. I placed them in internal pockets on my post-mastectomy zip up hoodie and the weight pulled them down together in front of my groin, like big, saggy, … you get the idea. Minor inconvenience for such an immense service.
Let me tell you, they made a HUGE difference. Compared to my oncoplastic reduction 2 months ago, with these nerve blocks, I woke up after surgery with less pain, didn’t use any PRNs (additional “as needed” pain meds) while in the hospital, and didn’t require any narcotic pain medications post-operatively. After my oncoplastic reduction, I received dilaudid immediately based on my pain level and took ibuprofen and oxycodone for 1 week after the surgery. So the paravertebral nerve blocks were a big win for me.
Thank you GW Department of Anesthesiology and to my acute pain management team for their attentive and comprehensive care. This process has given me tremendous insight into management of pain as a patient. I think we may struggle to understand our patient’s pain as physicians and based on my experience as an ER doctor, pain management can be a point of frustration for both patient and physician when not executed well. This topic is worthy of it’s own post.
With pain under control, my biggest challenge at home was physically managing my tribe of tubes. My Mom and my husband took turns as my drain managers. My Mom is the OG doctor mom but had no prior experience with JP drains. They both learned how to carefully strip the fluids through the tube into the bulb, aseptically empty them into a cup, measure, record and track the amounts from each tube and then dispose of the bloody fluids. I was dependent on them for my morning coffee, putting on clothes and for less glamorous things like bathing. Well, sponge baths really, like you’d bathe a small child.
I have never felt so dependent on someone else. The transition from being self-reliant and self-sufficient and a carer of others, professionally and personally, has been humbling. Even now I struggle with defining my own limits. But my body signals loud and clear when I’m pushing it too far and I resort to asking for help.
In the emergency department, I am comfortable knowing my limitations and whether it’s more hands, or a consultant, or security, I readily recruit help for the sake of my patient. Somehow this is much harder to apply to myself. Shame and a slight sense of failure accompany realizing when I can’t do something, especially, when it’s something I had so recently been able to do. I mean, who wants to ask for help cleaning themselves? Recognizing that I can’t perform my basic activities of daily living like, cooking, using the restroom independently, or (hardest of all) caring for my two kids is nothing short of depressing.
Through the last few months I have been forced to reach for help. And guess what? I didn’t explode and I never received any emails stating, “Kavita Jackson is officially a failure.” I was no less of a person. I was no less of me. In fact, I felt relieved. My shoulders were lightened by the increasing burden of myself. Acknowledging my vulnerabilities actually strengthened me, for the sake of me.
The next several weeks of recovery will include rediscovering my new chest, nourishing myself and working on rebuilding my physical strength so I can return to the emergency department ready to hit the ground running. I am energized and proud to be on the other side of all of this.
Kavita Jackson, MD
5 days ago, my breasts were surgically removed. This is known as a double or bilateral mastectomy. I reached remission about 8 weeks ago after undergoing an oncoplastic reduction. My surgery included removal of the tumor (aka partial mastectomy or lumpectomy), sentinel lymph node dissection and a bilateral breast reduction. Oh, I also had an ovarian dermoid cyst, ovary, and fallopian tube removed as well as my port. That’s a mouth full, let’s break it down.
The purpose of oncoplastic reduction is to remove the tumor bed and evaluate for any remaining signs of cancer and requires several steps prior to the actual procedure. On the morning of my surgery a radiologist identified my tumor using ultrasound and injected a radioactive seed into it to help my breast surgeon visualize it accurately later in the OR. Then another radiologist injected a radioactive tracer at the edge of my areola – albeit a brief burning and stabbing sensation, this injection was the most painful one I’ve had. This tracer, in addition to a blue dye injected into my breast in the OR and a special imaging technique called lymphoscintigraphy allowed my breast surgeon to identify my sentinel lymph node.
The sentinel lymph node(s) is the first lymph node that the affected breast drains to. It is removed to be evaluated for cancerous cells. Theory being that if the cancer were to spread from the breast, it would go through this particular lymph node first. So, if this lymph node shows cancer cells then it indicates that the cancer has spread outside the breast. This has largely replaced the previous practice of removing all the lymph nodes that the affected breast drains to, which was a more aggressive technique that is associated with side effects like lymphedema (swelling in your arm or leg).
—
My breast surgeon also removed my port, which I was arguably most excited about. It wasn’t something I ever wanted or identified as part of my body. It made me feel sick before I actually was ill from chemo. And as long as it remained in me, I had a lingering fear that somehow, someway chemo would flow through it again. It’s removal finalized in my mind that my chemotherapy really was done.
Next up was my plastic surgeon who reduced my left breast to match my new right breast. Then my gynecologic oncologist laparoscopically removed my ovarian dermoid cyst which was incidentally found during my initial work up of breast cancer. The large size (6cm) made it high risk for an emergent condition called ovarian torsion, so it was recommended to be removed. Unfortunately, when my surgeon opened me up, she noted that the cyst indistinguishably engulfed my ovary and thus my ovary and fallopian tube were also removed. Of course, this was a possibility that she had discussed with me at length prior to surgery to prepare me. It is what it is.
It is unbelievable the immense collaboration that was required between 2 radiologists and 3 separate teams of surgeons to make this possible for me all on one day. Not only that, my radiologists, oncologist, breast surgeon, plastic surgeon, gynecologist oncologist, and anesthesiologists – all women! Surrounded with love, compassion and encouragement, I headed into surgery with minimal hesitation.
The entire affair was led by my breast surgeon, the amazing Dr. Christine Teal – Chief of Breast Surgery at George Washington University and quite the inspiration herself. In 2010 she chose to undergo a prophylactic bilateral mastectomy after experiencing her mother battle breast cancer twice. She made this decision without being diagnosed with cancer herself or being tested for the BRCA gene (BReast CAncer gene). This was also before Angelina Jolie’s prophylactic bilateral mastectomy in 2013. The media coverage surrounding Jolie’s move, based on being BRCA positive, increased the public’s awareness of this option and made it seem less radical. But Dr. Teal was a trailblazer before Jolie. With true humility and an unbiased approach to her patients, Dr. Teal never mentioned her story to me. I found out by my Dad who forwarded me her moving and insightful feature in The Washingtonian -> HERE <-.
—
1 week after my first surgery the results of my surgical pathology evaluation of the tumor bed and sentinel lymph node were negative for any signs of cancer. Hence, I reached remission.
Remission could have been the end of my breast cancer journey. However, my biggest concern going forward was the risk of recurrence. I wanted to ensure to the best of my ability that I would never ever have to go through this again. Based on the characteristics of my breast cancer I was quoted a 1% risk of recurrence per year which accumulates each year! Meaning in 5 years, 5% risk of recurrence; in 20 years, 20% risk of recurrence.
HELL NO!!!!!!!! Not acceptable to me. I may have felt differently if I wasn’t in my 30’s. Without hesitation I pushed on to have both my breasts removed. Since there is no such thing as “never” in medicine, even with a double mastectomy the risk of recurrences is approximately 3% over the rest of my lifetime. This is the lowest possible risk I can obtain through my control. So, bye boobs.
Kavita Jackson, MD
I recently hit the gong in celebration of finishing my last cycle of chemo. As I reflect on the journey so far, it has been relatively smooth and free of complications. I am a “model patient,” per my oncologist. As if the onus was on me, the patient, to have selected this course. In truth, it is due to a variety of factors, many of which were not under my control. I’d be lying though if I said it didn’t feel a little victorious to know that as a patient I followed the textbooks in some way. Regardless, I am blessed and happy to be standing as I am today – I made it through chemo. And not just chemo–chemo during a pandemic!
It is ironic how my breast cancer journey mirrors that of the COVID-19 pandemic. I had felt a mass in my right breast around the same time the first novel Coronavirus case was diagnosed in Wuhan, China. I was alarmed but mostly felt uncertain of the significance of both my breast mass and the new virus. Within days of receiving the results of my breast biopsy, the COVID-19 pandemic was announced. My life was officially tossed upside down… stomped on… then kicked off a cliff.
My breast center had closed shortly after I was diagnosed with breast cancer because of a COVID-19 exposure at the center. As many nonessential businesses started to close, I scrambled to find a radiology center that would perform additional imaging I needed prior to starting chemo. Fortunately, my breast center truly is comprehensive and amazing. They helped coordinate finding another nearby radiology center, sending my prior imaging to them for comparison and obtaining the final reads from them. With some mental tensity but minor delay, I was on my way.
As my ER colleagues delved head on into the pandemonium, I started chemo. As the pandemic ramped up in NYC, I was at the peak of my chemo. And as we started to gain some sense of control over the situation, the side effects of chemo started to improve. Some states started to open and Coronavirus cases surged while I underwent surgery; which, I have to mention was preceded by an unpleasant but brief nasopharyngeal swab for COVID-19 that will make me second guess every single nasopharyngeal swab I order going forward.
—
Like most others, I quarantined as recommended and only left my house for 2 reasons since March 2020: 1) doctor’s appointments and 2) to get some sun on my porch. Isolation is not a new concept to people diagnosed with cancer. As immunocompromised individuals, people with cancer generally isolate themselves and/or protect themselves with face masks and frequent handwashing to reduce their risk of getting any sort of infection, not just COVID-19. So, regardless of the pandemic, I would be in quarantine.
I didn’t find it hard to stay at home. By nature–actually, by my doing–my lifestyle is active and often at odd hours of the day. School and medical training occupied about 95% of my life since graduating high school and increasingly so in the last decade as I specialized in emergency medicine and pushed my agenda of a personal life. I married my college sweetheart and had two kids during residency.
On a given day, in no particular order, I may be working, sleeping, taking the kids to or from two different schools, grocery shopping or cooking, studying, bathing/feeding/playing with the girls, and I can usually squeeze in a shower every few days. There are stretches of days where I only see my children while they’re sleeping or only talk to my husband via text messaging. So, I welcomed being able to stay at home with them. I slept a normal circadian sleep cycle, ate meals with my family, got to put my kids to sleep and see them when they first woke in the morning (a relished rarity)… I got a brief taste of normal.
Then chemo started and the girl’s schools closed in person sessions. Endless, uninterrupted time with my husband and two daughters was one of the unexpected silver linings of my situation. Obviously, I would have preferred to be in a better condition to be active with my kids but who says movie marathons aren’t quality time.
Seeing as I don’t know what the future holds regarding potential family planning due to the effects of chemotherapy, I would change nothing about my decision to have two kids during residency. Yes, it was crazy. Yes, I have a life-time of sleep to make up. And yes, there were many times I spent more time with my work colleagues than with my hubby and babies. But for many reasons it was the right decision for me. And my experience with breast cancer this year has reinforced that in my mind.
*Shout out to all my fellow parents in quarantine with their kids!* As unpredictable, chaotic and loud my job as an ER physician can be, it comes a close second to the challenges of being a parent. Hang in there! As parents, we do our best and our best is what we can do!
Of course, I am not alone in all of this. My village, so to speak, includes my husband, my family, my in-laws, my medicine colleagues, and friends, all of whom without my current standing is not possible. As part of a long term plan, my Mom and Dad were actually in town looking at apartments the day after I got my biopsy results. Within two weeks they were moved in. Then my Mom, who is a geriatric physician, was furloughed at her new job due to the pandemic. Suddenly, her and my Dad, who is retired, were free to help us with the kids. My Granny-in-law and Mother-in-law who developed flexibility in her job due to the pandemic also stayed with us for several weeks at a time to help.
The timing of it all…
—
I am now recovered. The pathology from my tumor bed and lymph node dissection was negative – meaning no signs of cancer.
I am a survivor.
I am fortunate to have had an uncomplicated medical course, abundant support from friends and family, and a silver lined journey.
Although the pandemic has not yet recovered, the world is learning how to handle life with COVID-19. And I believe that we shall overcome this as well. Of course, as with any disease process – prevention is key! Maximize the factors that you can control to reduce transmission of COVID-19: wash your hands frequently, social distance and wear a mask. After feeling a total loss of control over my life this year, I think it’s easy to act in accordance with the guidelines to reduce transmission of COVID-19 to myself and others. I’m not saying it’s not inconvenient. I am saying I believe it’s the right thing to do.
I know you’ve heard about herd immunity and high risk populations during the pandemic. The “others” your actions are trying to protect, is me. I am 32 years old. I am a daughter, sister, wife, mom, cousin and friend. I didn’t choose to have breast cancer and I don’t want to die because of others actions (or inactions).
It’s okay if you don’t care about me like that. I could be your Mom or Dad, brother or sister, best friend, significant other, or neighbor. I could be someone you care about a lot that you may not even know is immunocompromised. Maybe it’s not cancer; it’s their long-term steroids, or HIV, or diabetes, or their age causing their immune system to be more susceptible to infection. I didn’t have many choices this year but I do choose to take steps to reduce transmission and protect those around me.
For people with cancer during this pandemic, the medical field’s objectives include maintaining beneficial anticancer therapies as well as protecting the providers that care for us (1). About 50,000 new patients are diagnosed with cancer each day that require treatment (2) and the pandemic doesn’t change this. Earlier diagnosis and urgent therapy is associated with significant benefits in terms of morbidity and mortality (3), so it is crucial for cancer patients to have access to appropriate medical evaluation and therapies in a timely manner. I anticipate people are experiencing delays in diagnosis during the pandemic because of limited access to healthcare for routine screening for cancer, like, mammograms and colonoscopies, and for evaluation of suspicious symptoms, like, breast masses or pain, or painless rectal bleeding. The pandemic is not a reason to sit back. As patients, I urge you to advocate for yourself and reach out to your primary care doctor, virtually, to discuss any concerns.
Diagnosing COVID-19 in the general population can be challenging based on its vague and broad symptomology and imperfect tests. COVID-19 is even more challenging to diagnose in patients with cancer as its symptoms, such as, fever, fatigue, myalgias, anorexia, and loss of smell (anosmia) or taste (ageusia), and lab abnormalities, including, low white blood cell count (leukopenia), high white blood cell count (leukocytosis), high lymphocyte count (lymphocytosis), elevated liver enzymes, elevated inflammatory markers and elevated creatinine can also be due to cancer or cancer therapies. Combine this with several testing options which have limitations in their specificity and higher than ideal false negative rates and it can become messy figuring out if someone has COVID-19 or not.
The data regarding COVID-19 and patients with cancer is limited given how recently the virus emerged and it is primarily from Asia. Patients with cancer make up about 1% of all patients diagnosed with COVID-19 (4). It doesn’t sound like a large amount, however, cancer patients who are also infected with COVID-19 have TRIPLE the mortality rates than non-cancer patients infected with COVID-19 (5). Newer data from the same researchers shows that further out from diagnosis (after 30 days) mortality rates in patients with cancer actually increases (5). Even cancer patients diagnosed with COVID-19 that are otherwise in good health and don’t have other comorbidities–like me–have higher mortality than the general population.
As a new “survivor,” I am at an increased but unquantified risk of contracting COVID-19 as my immune system recovers over the next several months and accordingly will follow the guidelines for a little longer than most. But hey, I made it to the other side! Could it have been better? Uh, yeah, obviously, by not having happened in the first place!! It also could have been worse in so so many ways and I am thankful for the course of my journey and all of the individuals who were a part of it in any way.
Kavita Jackson, MD
References
The last several weeks I have felt up, I have felt down, I have felt too much and at times I have felt nothing. I am restless but too exhausted to do much. I am nauseous and my taste buds are failing me yet I am ravenous. I am awake and alert but my head feels foggy and aches.
At the time of my diagnosis, my care team reassured me that they would do everything possible to help me maintain my sense of normalcy, to minimize the disruption that the cancer and its management would have on my life. As no one expects or plans to get cancer, I appreciated this effort to curtail its effect on me. I had just moved to a new city. I had only just started my dream career that I spent the last 12 years of my life training for. I was a wife, busy mom to two toddlers, a homemaker. In many ways, the life I had been planning since I was an adolescent had just started. For the first time in a very long time, I had felt I had my shit together. Never ever, in my wildest dreams was I prepared for cancer.
I tried to pretend that everything was okay. I didn’t talk about it. I didn’t think about it. I carried on with my shifts in the ER. On my second shift since knowing my diagnosis, I met a patient who resembled me in no obvious way but was also dealing with the exact same cancer. Triple negative invasive ductal carcinoma. She was also recently diagnosed and has just started chemotherapy. As we were discussing her presenting symptoms, I realized I had heard very little of what she had said and my eyes felt heavy and wet. My head was in another world.
I wanted so badly to break down and confess my own situation to her. To tell her I actually, really understood her emotions and fears. Not just claim the proverbial “I understand what you’re going through.” We doctors truly mean well when we say this and it is our best attempt to connect with our patients based on our countless hours of studying the intricate details of diseases – the history, the demographics, the pathophysiology, the diagnosis, the treatments, the side effects of treatments, the survival rates, etc. We study these in books and then experience them via the patients we take care of. We know that short of experiencing the illnesses ourselves, we cannot truly know what our patients are going through, but we try our best.
But I said none of this. This patient didn’t come to the ER to hear my life story. I had to focus. Focus on what she was saying, examine her, come up with a game plan and keep moving. I had 2 more new patients on my list to go see as well as about a half dozen that I had already seen and needed to check on the progress of their work ups – were their labs back? Did they get their scans? How were their symptoms? Was anyone ready to be admitted or discharged? Run my list, run my list, run my list. There simply was no time to break down right now. People needed the doctor me.
You see, doctors don’t get sick. Or at least there seems to be this belief that as healers doctors must be healthy in order to care for patients or that we are somehow immune to the very maladies that we seek to treat. It’s simply not true. After all, we are also just human. Yet, physicians exhibit a tendency to overlook their susceptibility to illness and ignore their health (1, 2).
This is only perpetuated within the field of medicine amongst physicians. Starting in medical school, I remember being told how sick you must be in order for it to be acceptable to call out of a clinical rotation. Generally speaking, short of being admitted to the hospital or experiencing intractable vomiting or diarrhea, you were expected to be present.
Many times, the illnesses for which I write patients “excuse from work” notes are conditions that I have worked with. I have worked through multiple colds, migraine headaches, shingles, gastroenteritis and several weeks of contractions at 4cm dilated both times I was pregnant. It’s acceptable so it becomes the norm. Like many other physicians, if there was any inkling that I may be too ill to work, there would be an email or text trail including my symptoms with updates throughout the day or hours leading up to my shift, to justify possibly calling out.
7pm: Just want to alert you that I’ve developed some GI symptoms. Likely mild gastro I got from a peds exposure today or my lunch. Still tolerating PO [per os, aka by mouth], hopefully will improve by the AM
1am: Symptoms still progressing despite zofran and pedialyte, will keep you posted.
6:30am: I’ve been toilet-bound most of the night, I don’t think I can make it through a shift in this condition. Sorry for the inconvenience.
I called out sick once in medical school and once in residency. The initial relief I felt that I had demonstrated a justifiable reason to stay home and rest would eventually be clouded with guilt. Am I really unwell enough not to work? So-and-so worked a shift with gastro last week… What will my colleagues think? Then I wonder whether I should’ve just sucked it up and gone to work.
Why does someone who is sick (and knows it) choose to work? Sickness presenteeism is the term that describes exactly this and is remarkably high amongst healthcare professionals–up to 88% of healthcare professionals across the globe report some sickness presenteeism (3-14). In one survey of medical professionals (medical students, resident physicians and attending physicians), the majority cited they felt a professional obligation to fulfill work responsibilities when they are sick, with one third of participants stating they felt they had a professional obligation to “work no matter what” (15). The majority also endorsed that they would work while sick to avoid creating more work for colleagues, avoid negative repercussions for themselves, and to avoid appearing lazy or weak (15). Across several studies, physicians seem to agree on the reasons they go to work despite being sick (3-14).
Although I am fortunate to say that I have received nothing but the warmest support and consideration from my employer and work colleagues, as an ER physician who is not working because of my personal illness during the Coronavirus pandemic, there is a varying level of guilt that I cannot shake off. If ever there was a time I was needed or could make an impact in the position I trained a decade to assume, it is now. And I’m not there.
Seeing what my physician friends and colleagues, all healthcare providers, and frontline workers are managing is astounding. I know you are all putting patients before your own families and even your own health – you are all heroes. But please, you cannot forget your duty to yourself to put yourself first. The Hippocratic Oath asks many things of us as physicians but it does not ask us to sacrifice ourselves.
In medical school, I remember being taught that at the beginning of a code (a patient experiencing cardiac arrest) the first pulse you should check is your own. Textbooks and algorithms will tell you that you should check the patient’s pulse first. Well, duh, that’s how you identify cardiac arrest. However, for physicians, the concept of checking your own pulse first underscores the importance of evaluating and adjusting your physiology first. You’re not set up to think clearly and quickly to handle the life and death situation in front of you if you’re at the height of your fight-or-flight mode, with your heart rate pounding away at 200 beats per minute and emotions running wild. You must keep your physiology in check in order to appropriately take care of the patient’s crisis. Remember, without you–at your best ability–who will take care of the patient?
In the ER, my responsibility is to handle a variety of “life and death” conditions. I, at least mentally, take my own pulse before diving head on into these clinical situations and find it to be an extremely useful technique to hyperfocus to a state where I can do what I do best. While a helpful saying, I think it may inadvertently contribute to the pressure on a physician to be anything less than their best health at all times. The message is to check yourself, fix any issues and then take care of the patient. This puts the responsibility on the physician to fix any self-identified health issues which can translate into “be your own doctor.” You have the medical knowledge to do so, right?
All physicians have tried to self-diagnose themselves. It’s natural. I happened to develop shingles before my first exam of medical school. In immunology we had just learned about the varicella zoster virus, which causes chicken pox and can resurge years later as shingles, especially during times of physiologic stress. It was almost too easy to self-diagnose myself. I was evaluated at student health and the diagnosis was confirmed. When it feels like you’re living, breathing, eating and sleeping medicine, how can you not apply your profession to yourself?
What if you feel or identify something that isn’t as easily “fixed”? What if you can’t doctor yourself. Well, then what? There is no algorithm for this, but it seems the obvious choice would be to say something and go see a doctor.
Yet, this is so hard for physicians. Why? In a paper entitled “Illness Doesn’t Belong to Us” McKevitt and Morgan interviewed physicians with a recent history of illness to further understand why this idea that doctors don’t get sick exists (16). Physicians cited embarrassment, guilt and a sense of failure that they as a doctor succumbed to illness. When asked about the reasons why doctors “may not” get sick, physicians noted the importance of coping with pressure, stress and illness that is instilled within them during medical training. “The idea that you have to soldier on is very prevalent while you’re training.” They discussed difficulty with coping with illness, eluding to an unstated belief among physicians that “illness should affect them as badly as it does other people and that they should ‘work on.’ And most physicians in this study did work on. They worried about the burden their absence would place on their colleagues as well as judgement from their colleagues from being ill or being perceived as weak.
I think the following response from a physician highlights best why physicians may struggle with personal illness–
“Illness doesn’t belong to us. It belongs to them, the patients. Doctors need to be taught to be ill. We need permission to be ill and to acknowledge that we are not superhuman (Interview 52).”
Oh the dichotomy between physician and patient. We are by nature entangled yet somehow separated.
—
So, I have given myself permission to be a patient. I can be a physician and a patient. I am going to allow for things not to be my normal. I had already violated the mantra that doctors don’t get sick and now I’m not going to pretend like everything was okay for me. It’s okay not to be okay. It’s okay for this to disrupt my life. I’m going to allow it the time and energy that I allow every important aspect of my life. There are things I will lose with this experience but hopefully more that I will gain that will make me a better person and doctor.
This is not to say that physicians who are diagnosed with a medical condition cannot work. That’s absolutely not true. Many physicians have health conditions and also provide excellent care. Rather, I want physicians to recognize and accept that doctors get sick too, and that that’s okay–it’s the norm. Do what’s best for you and take care of yourself.
Kavita Jackson, MD
References
Dr. Lady Blog 