#homewardbound #abraxane #treatmenttuesday pic.twitter.com/6CSFbYm8MT
— Katherine OBrien (@ihatebreastcanc) June 23, 2020
Despite everything else in the news cycle, COVID-19 is still kicking our @sses. Here in Los Angeles, we’re getting pummeled. The thing about COVID is that most limit their understand to the virus and those that have the virus. But the effects of COIVD-19, especially in the medical world, are so much broader than that. People are suffering or dying from other diseases and illnesses and their treatments are being affected. One lady, Katherine O’Brien from Chicago, has chronicled her scary cancer battle during the pandemic.
Three Tuesdays each month, Katherine O’Brien straps on her face mask and travels about half-an-hour by Metra rail to Northwestern University’s Lurie Cancer Center.
What were once packed train cars rolling into Chicago are now eerily empty, as those usually commuting to towering skyscrapers weather the pandemic from home. But for O’Brien, the excursion is mandatory. She’s one of millions of Americans battling cancer — and she depends on chemotherapy to treat the breast cancer that has spread to her bones and liver.
“I was nervous at first about having to go downtown for my treatment,” said O’Brien, who lives in a suburb, La Grange, and worries about contracting the coronavirus. “Family and friends have offered to drive me, but I want to minimize everyone’s exposure.”
While her treatment hasn’t changed since the novel coronavirus spread across the United States, the 54-year-old is at high risk of severe complications should she become infected. Those risks haven’t declined significantly for her despite the Illinois governor’s loosening of COVID-related restrictions.
She’s not alone in fearing the deadly combination of COVID-19 and cancer. One study, which reviewed records of more than 1,000 adult cancer patients who had tested positive for COVID-19, found that 13 percent had died. That’s compared with the overall U.S. mortality rate of 5.9 percent, according to Johns Hopkins.
Beyond the concern of cancer patients catching the virus — with their already depleted immune systems — many doctors worry about people delaying their scans and checkups and missing time-sensitive diagnoses. A KFF poll found that nearly half of Americans had skipped or postponed medical care because of the outbreak. Cancer patients seeking care face an array of obstacles as states reopen, such as heavily restricted in-hospital appointments and new clinical trials on hold. (KHN is an editorially independent program of KFF, the Kaiser Family Foundation.)
“Cancer doesn’t care that there’s a coronavirus pandemic taking place,” said Dr. Robert Figlin, chair in hematology-oncology at Cedars-Sinai in Los Angeles. “We don’t want people who have abnormalities to delay having them evaluated.”
The article lists several other side-effects of COVID’s affects on treatments. Megan-Claire Chase, who is currently in remission from stage 2A breast cancer, was laid off during quarantine and she lost her health benefits. Now she doesn’t know how she will pay for the mammograms and MRIs she needs. Linnea Olsen, who has stage 4 lung cancer, has relied on trials to keep her alive and those trials are drying up because they are not viable as COVID rages on. Cancer patients are immune compromised, making them far more susceptible to any disease, but especially to COVID-19. If they stay home to avoid getting infected, they die from lack of treatment. If they leave for treatment, they a huge risk. It’s terrifying.
There is another side to all of this too, one that I feel has just as much affect on someone battling for their life: the human connection. Precautionary measures to prevent the spread of COVID has led to unpopulated exam and patient rooms, with everything sterilized and void of any personal touch. So patients are made to sit behind plastic, speaking to faceless (masked) people, receiving frightening and devasting news, unable to hold anyone’s hand because they are forced to go through the entire procedure alone. Maybe an iPad or phone might be allowed for a FaceTime with a loved one, but that’s a much different experience.
If this sounds personal, it’s because it is. Please, I know it sucks, but if you are able to adhere to all the quarantine precautions, please do, including staying home if possible. If you can’t, please – please – wash your hands, wear a mask and stay six feet apart.
The #COVID19 pandemic will likely cause at least 10,000 excess deaths from breast cancer and colorectal cancer over the next 10 years in the U.S., @NCIDirector Ned Sharpless (@theNCI) said in a virtual joint meeting of the BSA and the NCAB June 15. https://t.co/KAkTFMDQ10 pic.twitter.com/wUnLanXhAe
— The Cancer Letter (@TheCancerLetter) June 22, 2020
#treatmenttuesday #abraxane #chicago pic.twitter.com/5Rzv46sINO
— Katherine OBrien (@ihatebreastcanc) June 23, 2020
En route to #TreatmentTuesday @LurieCancer pic.twitter.com/Evz87O1OjF
— Katherine OBrien (@ihatebreastcanc) June 16, 2020
Photo credit: Twitter
A cancer person losing their job and as a result not having insurance to pay for life saving treatment is something that as a European, I find it really hard to get my head around.
I live in America and believe me, we also can’t get our heads wrapped around it
Sadly, that is life in these United States and it could instantly get much worse this morning if the Supreme Court rules in favor of Trump’s plan to end protections for those of us with pre-existing conditions.
As a cancer patient, my biggest fear is I would use up so much sick time, I would go off payroll and endanger my insurance coverage. I knew to tell my doctors this right up front and they worked with me to schedule treatments so I missed very little work: surgery on Saturdays, daily radiation at 6 AM, Chemo at 4 PM once a week. Of course, surgical recovery and reactions to the treatment can’t be controlled. I was so fortunate to make it through.
@Lightpurple: How awful that you had to shoehorn in radiation and surgery and chemo around your work schedule. What an extra layer of stress and exhaustion on top of cancer and treatment. I’m glad you made it through.
@Venus, thank you. My doctors actually wanted me to continue working to keep my life and routine as normal as possible. I didn’t want people guessing what was going on with me so I sent out a staff email saying what was happening and how I wanted to handle my illness. People were phenomenal. I got so much incredible support on a daily basis. After each stage of treatment, my manager and secretary held an office party for me for getting through that round.
@lightpurple, you are a badass and an inspiration. Thank you so much for sharing your journey with us.
So many hugs to you, lightpurple.
As an American I see having cancer as a huge mountain of expense that is more frightening than the cancer itself. I truly don’t know how the majority of our citizens can handle it, that’s how bad things are.
I had to have a mammogram for a lump and honest to god, that was my first and most lasting thought – that if I had it, the treatment would bankrupt us. And then that I might die and my husband would be stuck paying off god knows how much.
Here in the US of A, we feel that it is not enough to be fearful for your life, we also want you to worry that you’ll lose everything you worked for your entire life in the process. It’s like a bootstrap thing or something. Also, our insurance companies lie and fight to NOT cover things, so even if you do have it, you still need to worry that it won’t cover you. Yay freedom [to screw people over]!
It’s petrifying. Especially the losing the job thing
I know a couple who decided not to get legally married because he will need eventual long-term care for a medical issue and she bought the house they live in way before they met. If they were married, she would lose the house to pay for his care.
I don’t think it’s like that in every state. I took elder law in law school and in MD at the time, the community spouse could stay in and keep the house. But I don’t know if it is still that way. And I know in Ohio, within the last 10 years, a friend of mine’s parents got divorced because her father needed to go into a nursing home. Shameful
As a Brit I really can’t get my head around how AMERICA has such a messed up health system. No money/insurance? You die. It’s incomprehensible. Our health service has it’s flaws and our right wing government has been working for years to reduce access to anyone who isn’t British but you won’t die as a direct result of not being able to pay for treatment and the vast majority go in and get everything they need.
On a related note, a friend of mine was told she had breast cancer at the start of lockdown (a week before her 40th too) and although it’s been incredibly stressful the system kicked right into gear, the lump was out within two weeks and she’s now nearly finished her course of radiotherapy (no chemo needed, whoop). It’s been awful trying to support her via zoom but we’ve found ways.
Wishing your friend all the best.
@Lightpurple thank you, you’re very kind. It sounds like you’re going through a lot yourself. Wishing you all the best.
I work in health care, in oncology. COVID has reverted us back to treating cancer like it is the 1970s or 1980s. Most of us worry about what will happen in the next year, the next 5 years, without people getting screened or coming in for care, as well as people having to delay surgeries and chemotherapy due to closures. That also doesn’t take into account the large group of people that also don’t have insurance on top of everything else. We are already seeing people presenting with more advanced disease, or people with cancer that is now spreading and advancing because of limited care during coronavirus. It’s very scary to think how behind we are in treating cancer right now.
A friend is going through treatment for her second bout of metastatic pancreatic cancer right now. At Mass General, one of the virus epicenters. The stress on her has been immeasurable. Initially, she was so freaked out she almost gave up, convinced she would get the virus the second she walked through the doors of the hospital. She called me from her car crying before she left for her first treatment. I talked to her the whole way, assuring her there would be safeguards. When she got there, she described it as a scene out of E.T. Checkpoints everywhere where she had to prove who she was and where she was going, what symptoms she had, temperature taken; staff in masks and face shields at every checkpoint, plastic sheeting everywhere. It was surreal and disorienting. By her third treatment, she had become accustomed to it; her biggest anxiety now is the drive to and from. And she’s doing well.
Good for her. I hope she keeps doing well.
I had a bilateral mastectomy on April 24th and being a patient has additional challenges during the pandemic. No family allowed on the floor means the nurses and staff have to do EVERYTHING, and they were totally overwhelmed. I waited 6 hours for water and didn’t get pain meds for 18 hours (which was fine but…) It’s really challenging!
My aunt is going through exhaustive treatment for metastatic breast cancer – she is the whole heart of our family. She’s also incredibly private about everything, but you can see it wearing on my uncle, not being able to go with her to treatments or appointments. And all these selfish people refusing to wear masks…all I see is this beautiful woman clinging to life without the slightest grumble and is so vulnerable to this virus. She has to go out to her Dr, she has to be in certain situations, but Karen and Kyle are up in arms about “but it’s my body!” And “I want a haircut!” Eff these selfish people.
Today and Monday are the remaining scheduled Supreme Court decision days for this term. Among the 14 cases awaiting decision is Trump’s attack on the pre-existing condition protections in the ACA. Please send every positive thought, prayer, energy towards a decision in favor of humans. At 10 o’clock this morning, our lives could change drastically based on what the Supremes do. Let’s hope it’s a change for the better.
Trump’s tax returns are also on the docket.
I’m an anemia patient, currently in remission, who used to receive infusion treatments at Northwestern University’s Lurie Cancer Center. I cannot even imagine traveling there during this pandemic. I feel for Katherine, she must feel so weak from the chemo as it is.
I feel for those going through treatment now. As a two-time breast cancer survivor, I see my surgeon for follow up/mammo every six months. I had an appointment recently (scheduled before COVID) and my doc’s scheduler was losing her mind because of their reduced capacity for seeing patients due to social distancing. She was at the peak of frustration trying to get me in for my next appointment. She was like: “I’ll call you. And it won’t be six months. Probably a year.” I’ve been in recovery a while, so my anxiety isn’t the beast it once was, but if this happened even a year ago, I’d have been in bad shape hearing that news. Sending much love and strength, Hecate, for whatever battles you face.
It sucks. I’m halfway through my whole treatment plan; I had one course of chemo and a double mastectomy w/ reconstruction, and started my first of four rounds of my second course of chemo last Monday. It’s scary, lonely, and frustrating, especially when I can’t work or barely go out in public during treatment, because being immunocompromised puts me at too high a risk. I’m completely isolated while also being completely dependent on the financial support of others to help me through. Don’t get me wrong, I’m still incredibly grateful, and I know I’m so many ways I am much more fortunate than many of these women, especially when it comes to health insurance and good coverage. Still, I never thought I would have to go through so much of this by myself, or wonder if anyone will hire me once I’m well enough to work again.
Kealeen, sending love and prayers to you for your wellness and healing.
Sending healing, supportive thoughts your way.
I am sending you love, strength and health.
Thank you so much @lightpurple @phaedra @embee, I am so grateful for the support, and really hope I didn’t come across as a mopey brat. All the hugs and good energy your way!
My neighbor is having outpatient chemo for brain cancer. When he got his diagnosis, his partner wasn’t allowed in the room because of coronavirus. She told the hospital they needed to rethink their inhumane policy, and the hospital was really surprised, like they hadn’t thought through the implications of telling someone such devastating news without having a loved one there.
Got diagnosed with breast cancer in the first week of March. My uncle was a Doctor and told me in no uncertain terms that I needed to get everything in order as soon as possible because things were going to be shut down and delayed.
Was able to get my follow-up biopsies, mastectomy, and reconstruction done before the month ended. Now in the middle of chemo. My husband hates that he can’t be there with me during everything. Thank you for writing this Hecate. Made me cry.
OMG we had such a similar experience! Hope you continue to progress in health!
@Eboni, my heart is with you <3
Diagnosed with and began treatment for Stage 1 breast cancer during Covid-19. All due respect to Ms. O’Brien but I don’t connect the logic of not accepting rides from family and friends and choosing to take 1 an hour of public transportation to “minimize everybody’s exposure.” Wouldn’t her exposure increase by taking public transportation?
I’ve accepted rides from family who I know are social distancing (as am I) to and from my lumpectomy. I sat in the back while the driver and I both wore masks and we wiped the seats down before and after. I didn’t feel like I was putting them at risk because my hospital in Maryland makes everybody check their temperature before entering and it’s easy to social distance from other patients. The physicians and nurses always had their mask on, as did I. I guess I don’t feel like accepting rides was posing a significant risk increase and frankly felt much safer doing that than taking public transportation to and from the hospital.
Respect to those sharing their experiences! It’s very scary, especially in a pandemic. Options are still available though. Encouraging everybody to be super resourceful.
It depends on the public transport system. I take the subway into work once a week. The station doors are open so I touch nothing with my hands. I have a monthly ticket, which I tap on the turnstile and then clean with wipes I carry. The whole station smells of bleach. Signs says masks are required. In the mornings, I have often had an entire car to myself. The driver sections are roped off. Again, everything smells of disinfectant. In the evening, there are usually more people but not that many more. People just aren’t riding
And sending you healing thoughts
” A KFF poll found that nearly half of Americans had skipped or postponed medical care because of the outbreak.”
I’m not sure how true that is. Some places, like Kaiser (funny that they are the ones mentioned in the write up), you are not allowed to schedule those appointments. My Grandmother was suppose to get two different type of screenings for her breast cancer & I was only able to schedule one (I was able to schedule it a week before everything shut down; for the other one, that screening schedule hadn’t open up yet – something I hate about Kaiser). Kaiser, where I am at, has shut down a lot of their smaller clinics. Even our local news was reporting this about a month ago, that the cancer rate was going to go up due to the lack of screening because those have been deemed “unnecessary” by the medical field.
I just celebrated my 1 yr anniversary of ringing the bell. Over the last few months, I’ve thought about how differently and isolating my treatment would have been if I had been diagnosed a year later. I cannot imagine the added stress that these women and men are going through right now. I can only pray for them. Hope they make it through. I worry for those who don’t have insurance or who will lose theirs. It’s so blatantly unfair we don’t have a better healthcare system and that those who could give us universal healthcare are bought and paid for by lobbyist for the insurance industry.
I am living in NJ and started to feel terrible through March and April. I finally pulled some strings and got a telemedicine appointment with an internist on May 5, who sent me for $2500 worth of lab tests the next day. The following morning, she called and sent me to the ER. I got dropped at the ER, alone of course. 4 hours of tests later (including a bone marrow biopsy done in that covid-y ER), an oncologist diagnosed me with end stage high risk Multiple Myeloma and renal failure. I was admitted to the hospital and started on chemo within 24 hours. Apparently, I was about 24 hours away from death at that point, and it took a rough 6 days alone in the hospital to bring me back from the brink. Talk about cutting it WAY too close!
Its 7 weeks later and I am halfway through my third round of chemo. Hopefully I will have a bone marrow transplant in August which will give me some additional years of life. Getting a bone marrow transplant during the second wave of coronavirus is a big roll of the dice, but option B is death, so I am rolling those dice, wearing masks and a face shield and just retreating from all outside life.
I have international health insurance (since I am a permanent resident of Mexico), and getting bills paid has been a nightmare. To ensure no interruptions to my care, I liquidated my savings (during a horrible market downturn) and self paid, but again, option B was death. The nurses tell me that a good 20-30% of people diagnosed with this rare blood cancer choose death over the expensive and brutal treatment options. It’s heart breaking to think so many consider it an option. And we label other countries as “s**t holes”?
On the bright side, One of those $2500 lab tests came back that I was positive for the antibodies. So, at least until my immune system is obliterated by the pre-transplant chemo, that isn’t a worry. Afterwards is another story. But, you know, don’t want to step on anyone’s freedom to express themselves by avoiding the mask. I will stay inside, count my blessings and avoid catching the stupid.
Thank you for sharing your story. Continue to be strong. I am keeping you and your fight in my thoughts. You got this!!
Thank you BrenChris! While this wasn’t at all how I saw 2020 going, I see it as a miracle that I GOT help (albeit at the last moment), and I did not die, so any extra time I get is pure gravy. I am wildly fortunate, bad cancer diagnosis and all. It’s the ones that didn’t have the friends to pull strings to get an initial medical review, or the means to get the lab work, or to self pay to stay on track, its those people with cancer, maybe undiagnosed or as of yet untreated, that make my heart break. Going through the diagnosis and the initial treatment alone in the hospital was awful, but I am 52, and healthy and educated and able to self advocate. There are so many that just don’t have those advantages, the stories the nurses tell are gut wrenching. And it is a bit of a ‘squeaky wheel gets the oil’ in those catch-all non covid wards in the hospital. The elderly that are frail and scared and lonely, well, those 6 nights in the hospital were a sad wake up call about the state of our health care system, especially mid pandemic. I can’t even begin to imagine the horror of the people in the ICU with serious coronavirus, how insanely awful that is. How sudden and deeply unfair and terrible for the families and loved ones kept apart. When I start to feel self pity, I remind myself that, just across the street from the cancer center, in the hospital ICU, there are so many that have it much much worse. Its too bad that so many people in the US are unable to grasp how truly awful it can be – this virus operates under the rules of science and not wishful thinking and blame-ism. It’s a scarier end than cancer..
It’s not as important as cancer, but I had foot surgery 3 weeks ago and it’s been tough. My right foot had flattened out almost entirely and one of my ligaments was barely there. My Dad dropped me off and could only go as far as the front desk. I waited in the waiting room by myself and had to wait in the recovery area to be led out to my Dad, who was waiting in the car. I got laid off from my job 3 days before my surgery and became very depressed. I hadn’t been there long, so they wouldn’t offer me any sick or vacation time. I had to drive to the office, which hurt because my foot was swollen pretty bad at that point, just to be laid off. They’re paying for my health insurance until the end of July. I’m on unemployment, but I can’t walk without a knee scooter. I’ve been looking for a job, but I’m scared of doing in person interviews because I still have a cast, and it’s hard for me to get in and out of the house. I live with my Dad, but he works 6 days a week, so he’s not around to help. The house is such a mess and I would feel guilty having anyone over. I’m not sure what I’ll do once July is over, I’ll probably try to pay for insurance myself. I’m not going to be able to wear regular shoes until September, from what I’ve read. My Dad hasn’t even met my doctor, I go into the office for checkups on my own, opening doors is tough because my scooter requires two hands. It’s been tough, and I’ve regretted the surgery, but the pain before was awful. I couldn’t walk to my bathroom or kitchen without a stabbing pain in my foot.