NHL - not just the National Hockey League, unfortunately.

I guess it's a good thing I didn't name this blog specifically about breast cancer, because now apparently it's a non-hodgkin's lymphoma (NHL) blog (until the next one?). I hadn't thought about breast cancer for 20 odd years since med school when I was diagnosed, and I have thought even less about NHL (minus getting a laugh at the Curb Your Enthusiasm episode reference to Hodgkin's being a "good lymphoma"). 

Pulling out my basic pathology textbook, my Harrison's internal medicine, feeding my pathology report into Open Evidence, and absolutely overwhelmed by having to revert back to the medical student inside me to re-learn the language of an entirely new cancer. 

Here's what I know: I have a non-Hodgkin's lymphoma. It is either follicular lymphoma, or it's DLBCL (diffuse large B cell lymphoma). These have wildly different treatment pathways, biologies, treatment responses, and prognoses. One requires a bigger harder hit, but is curable (DLBCL) - the other is the sleeping demon that requires less poking, because it is slower and sadder and not curable. It may lie around for quite a while doing nothing, but it is not going away, and it is Not Curable. 

When I was diagnosed with breast cancer, my head spun so quickly that it missed the opportunity to enroll in clinical trials as a treatment-naive patient. I did look for some lobular trials but didn't find any, then pretty much turned towards standard of care. (I did enroll in every patient registry, long term surveillance, and non-clinical breast cancer trial I could find, because I believe in evidence, science, research, and in using my sad ass genetically mutated body to improve the chances of other people surviving what I cannot.) I don't know that it would have made a difference in breast cancer, but since this is my second cancer rodeo, I know now that researchers salivate over people diagnosed with cancer but who aren't yet treated: it's the early, rare opportunity to see if a newer or different therapy is better than what we already have. 

So, I filled out an intake form for the Blood Cancer United Clinical Trial Support Center Referral (https://bloodcancerunited-forms.careboxhealth.com/?IRC=NOIRC) and already got a phone call from a lovely RN navigator who was my first encounter in this arena. They will notify me of any clinical trials I might qualify for, now and forever, as my disease progresses, until I am no longer in need of a trial. She offered advice, guidance, and reassurance that I never felt from a breast cancer organization or researcher. I'm already so impressed with the Blood cancer community, and I've only been here for 24 hours. 

If somehow you are newly diagnosed with a blood cancer and find yourself on this blog, I highly recommend signing up with them. While the clown show of insurance, prior authorizations, appointments, and scans continues its circus, at least I already have a human on my team, answering my questions, and who doesn't care what my insurance coverage is. 

Next steps for me: a PET scan, an excisional biopsy (cutting out the lymph node they merely stabbed 4 times), and waiting for a call from the RN navigator at MD Anderson. I want to capitalize on my early status to enroll in any clinical trials they might have, to establish care with the absolute experts, and to make sure every last sample, scan, lab test, therapy, and treatment recommendation is made with the highest level of evidence and expertise and right now all signs point to Houston. (United frequent flier miles, here I come!) 

I'm also waiting for certification from the World Trade Center Health program for my second cancer. As a 9/11 responder, I am certified for my breast cancer and have received care for that under the program, for which I am grateful. Until they certify my lymphoma, I am on the hook for paying for anything related to its treatment. 

There could be an entire blog post about the absolutely harmful disaster that is our current health care insurance system, but suffice to say I do not have employer based health care and neither does my spouse, despite us both being health care workers. Because we are part time workers, we depend on an ACA healthcare plan like roughly 20 million other Americans who rely on this for health care (and I truly thank former President Obama for making that happen). It is expensive, even for routine primary care. Without it, I could either go bankrupt paying for cancer treatment or forgo treatment altogether. While I am fortunate enough not to have to make that decision (and to be clear am NOT seeking financial support) millions of my fellow cancer patients are making exactly that choice, and it's easy to see why GoFundMe campaigns are now the largest source of medical funding for many Americans. 

Our society makes decisions that lead to consequences. This was never intended to be a political blog or post, but the public health student and part time worker inside me know that you can't talk about being a cancer patient in the United States without talking about these things too. We have chosen so far as a society to blame people who become sick and hold them responsible for costs they had no choice but to incur, rather than deciding to collectively pool all of our risk so none of us falls through the cracks. (Believe me, I'd much rather do something else with a few thousand dollars than pay for a PET scan....) We can make different choices, and if you are still undecided how to vote next week, perhaps give a hard look at any candidate who wants to change the healthcare system. If it's not an important issue for you today, it might be tomorrow, or soon, for you or someone you love. We can do better: for cancer, for long term illness, for the frailty and complications of growing older. We can choose a different path - if enough of us care to do so. 

My own path right now is a slow walk towards definitive diagnosis, without which there is no treatment plan. It moves at a glacially slow pace, and I don't do well with waiting, so that will be my daily challenge - to wait. Walking slowly, one foot in front of the other, one hour and day at a time, waiting. 

Survey Says.....

 

If you are Gen X, you might remember a game show called Family Feud, where teams of family members would try to agree on the most common responses to certain survey questions, against other teams of families ranking the same responses. Like, "Name the first thing you'd buy if you won the lottery?" and if you guessed the most common answer, the host would say "Survey says.....Buy a house!" or whatever the most common survey answer was. 

Well, after days of mental gymnastics trying to bet on what the most likely cause of my swollen lymph nodes would be, my Survey Says....Follicular B cell lymphoma. Not breast cancer, the beast I know and understand. A totally new, separate, different in literally every way cancer. 

What in the actual fuck. Who has two cancers at age 51? Whose karma is that epically fucked? When I was first diagnosed with breast cancer, I had genetic testing done and it turns out I wasn't born with defective genes. My genes, epigenetics, proteins, DNA and cell functioning have been derailed and deformed by the environment I grew up in - Gen X, microwaving plastics since 1975. 

Since I know I wasn't born like this, I know inhaling debris from ground zero for a month, working 20 years of night shifts, and a largely stressful job in health care almost certainly screwed up my biology against any chance it had, no matter what other healthy choices I made. 

I learned the first time around that asking "why me" is a ridiculous question when it comes to cancer. It's tempting to ask "why me a second time", but I know there's no answer. Cancer doesn't care. I do know that I have to learn an entirely new vocabulary, a new subset of cancer lingo, new biomarkers and drugs, and that there will be an ungodly amount of radiation, testing, prodding, and possibly chemo in my future. 

It feels unreal to be here again, so soon. A quick and terrifying search of this beast identifies it as "indolent but incurable". Like right off the bat, the first 5 things I read about it said "incurable". While we always hesitated to use the word "cured" from breast cancer knowing it can return, I certainly never read anywhere that it was presumed "incurable" at early stages. This cancer is not curable. It's like a demon in hibernation....it might stay quiet, sleeping, something that can be "watched" - and it could stay that way for a while. Poking it too soon with drugs or radiation might actually wake it up and cause it to become aggressive and rapidly fatal. So maybe don't poke it, don't try to treat it, just wait until it wakes up and tries to kill you - or doesn't. These seem like pretty lousy options. 

I've gotten some advice on where to go, and who the experts are, and we are doing all the paperwork and busywork that happens when you get a cancer diagnosis. My work colleagues have come through in a big way getting my shifts covered for tonight and tomorrow because I'm in no position to function in the ER, and I am so grateful to have the next 48 hours to process this new information. I won't have any more info on treatment or next steps until after a PET scan, so now I just have to sit with the reality of a second cancer diagnosis and another ride on the cancer roller coaster. It is terrifying, and I want to get off this ride. 

Diving With Sharks - A good reminder that death comes for us all

 

15 days ago I flew to Fiji. I promised myself I'd focus on being there, not on what's here, and boy did I ever - I almost drowned in my first diving accident, I burst an ear drum, I did three different dives with enormous sharks, and I completely immersed myself in the beautiful warmth and hospitality of our Fijian hosts. There were even a few moments when I forgot about cancer. 

I've never had any issues diving, though I'm not hugely experienced. My only idea as to what happened is I descended too quickly, didn't breathe enough while equalizing my ears, and panicked when I couldn't expand my lungs. I took my reg out of my mouth, I swallowed water, I shot up towards the light of the surface and thought "This is it - I'm going to drown". I was about 40 feet down, close enough to see the top but far too deep to be near the sweet, sweet air I was hungry for. I surfaced far too quickly in an absolute panic, couldn't swim or inflate my BCD and just bobbed there sobbing. Easily the closest I've ever been to dying and by far the most terrified I've ever been - and for a brief time, there was something scarier than cancer. 

I forced myself to dive again the next day, and I'm so glad I did because holy cow - the sharks. Tiger, bull, nurse, reef, lemon - and so, so many. From 30 ft long pregnant tiger sharks to 3 ft long baby reefs, they were awesome to witness. I saw them on 3 dives, and was close enough to see their teeth and into their eyes. They were not not scary, but I didn't feel scared. We're not their natural prey, and frankly death by tiger shark doesn't sound that much worse than death by metastatic cancer. My immediate risks far overshadowed whatever I was worried about at home, and for a few days, that was exactly what I needed. 

I showed up for my biopsy on 10/21. This is biopsy #4 (thyroid, breast, skin, now lymph node) in my 51 years of life - my 4th go around on the "is it or isn't it cancer" carousel. I want to get off. I don't want to have to be the one to tell the person doing the biopsy how to label it correctly. The radiologist was pretty uninterested and not especially concerned .... until I said "could you please make sure the samples say history of LOBULAR breast cancer?" ... and her entire demeanor changed. She sighed, frustrated, and said "all it says is history of breast cancer. I'll make sure it includes lobular."

Why am I the one making sure my pathology samples are correctly labeled? Why do I have to remind the oncologists that of all breast cancer metastases to the GU organs (vagina/vulva/uterus/cervix) EIGHTY EIGHT PERCENT OF THEM ARE LOBULAR. Sorry for the all caps rant but GODDAMN this makes me mad. How many ILC patients have no idea that their samples don't specify what kind of breast cancer they had, leading to misses and delays in diagnosis. This is such bullshit. The radiologist who took the samples got real serious after that, I got 4 giant pokes and core samples taken, and now I wait. 2-3 business days. They will likely post the results in my portal before my oncologist ever sees them. I will be left to make sense of and process them myself. At least they didn't drop at 5pm on a Friday. A stay of execution until Monday at least.

I remember the last days BC - before cancer - before Jan 27, 2021 - when I waited for the results of the breast biopsy, and I enjoyed the last days of thinking I might still live a full life, that I might not have to face disease or early death, and I'd give pretty much anything to go back to BC. AC - after cancer - I did what I had to do for 5 years of treatment, I followed doctors orders, I tried to live a healthy life so maybe there would be an after after cancer. 

And here I am again, in the truly awful place between questions and answers, symptoms and diagnosis, disease and treatment. It's almost comically tragic that my best case scenario is an indolent B cell lymphoma - am I really hoping for lymphoma? Has it come to that? Indeed it has. I have at least this weekend to dwell in the in between, a few days left when it might still be after cancer, not new cancer; when I can still pretend I'll retire and grow old and enjoy years of life with my husband; when I can have a few days without cancer. It took me 5 years to get to the point where I could sometimes go days or even a week without thinking of breast cancer - I fought hard against my own mind to get there, and now it feels all for nothing. Right back where I started, except this time I know more, the prognosis is likely worse, and the treatments more brutal. I am actually grateful they didn't get to my samples before the weekend so I can live in the unknown just a short time longer. 

When It's Not Your First Cancer Rodeo

 

In late September, I had the privilege to attend the ILC International Symposium in San Francisco. It was so great to hug my fellow advocates in real life, to brainstorm with researchers and clinicians, and to hear about the amazing work being done to crack the code of lobular breast cancer. 

I came home and went about my life as I do even during Breast Cancer Awareness month - work, dogs, house chores, and it has been so warm here that outdoor swimming is still a thing. I put on a swimsuit - and there they were. 2 giant lymph nodes sticking out of my groin, wildly larger than the other side and visible to the naked eye. Once before, 7 years ago, I felt a lump in my breast that made me sick to my stomach. I had that same feeling seeing those nodes. 

I've had a few days to spiral out of control, to see my oncologist, and get an ultrasound all of which just confirms what I already know. These are bad. They can't tell from ultrasound exactly how bad, but they have some very bad characteristics on the pictures that indicate what they are - most likely metastatic deposits of cancer. I've gone down the differential pathway that has ruled out infection, other swollen lymph nodes (none), don't see any weird moles or skin changes on my leg, and now we're left with the exciting game of "find the cancer". 

This would be weird for breast cancer - usually. For ILC? It loves the bladder, the uterus, the outer lining of the GI tract - all things in the area that could be full of my breast cancer. It also could be an entirely different cancer - vagina, cervix, rectum all drain into those nodes. The differential is wide, and it is bad. How bad? Don't know. But cancer in lymph nodes is cancer that has spread from elsewhere (except lymphoma), and that means metastatic cancer by definition. Sure, they could be "local" metastases, but that isn't very reassuring. If they are cancerous, they are spreading. 

Here's the part where it's not my first rodeo - I've already had the freak out of a first cancer diagnosis, and part of me always expected this shit to return. I just didn't think it'd be so soon, or that I'd have an entirely SECOND cancer at the age of 51. I'm not sure right now what these are and my brain is out of control with the possibilities, but I've always been a "more info is better" person and thus am already planning for the absolute worst outcome. 

I'm supposed to get on a plane tomorrow and fly 1/2 way around the world for a scuba trip that is my dream - sharks, night dives, wrecks, beautiful corals. My brain knows that not diagnosing this shit for another 12 days will make ZERO difference in my life expectancy - which is entirely dependent on what type of cancer cells these are and how aggressively they behave, not making the diagnosis tomorrow. So cancelling the trip makes no sense from a medical perspective. But I don't think I have enough mind control to put this out of my head and enjoy the trip - though the thought of this being my last scuba adventure for a while does make me think about just going. 

Wherever this is headed, it's not good. Once again facing scans, needles, biopsies, radioactive tracers, maybe surgeries, maybe radiation, maybe chemo. And then, of course, facing death. It's too soon and it's too much after only finishing treatment for breast cancer 5 months ago. I was finally starting to see the possibilities of a few years between now and later when we could enjoy our lives, our home, our travel, our puppies, and each other. 

When I think about dying my biggest heartbreak is leaving my husband - whom I met in 2016, and with whom I've only had 10 years. I want more time. I want to die of old age with him by my side 30 years from now. I want us to be able to enjoy all of the benefits of the brutal work we did in healthcare for 20+ years. We met so late in life, and my only hope was to have as much time together as possible. I don't want 5 years of bliss followed by 10 years of a slow fight against a cancer I can't beat, that ends up defining whatever time we have left. So today I am deciding not to let that happen. 

Maybe I have metastatic cancer. It's sitting there in those nodes and 12 days from now it'll still be sitting there. But if I could have gone scuba diving with sharks in the meantime, I don't think I want cancer to take that away from me. I don't want it to define what's left of my time on earth, to ruin my marriage and my family any more than it has. I want people to think of me as the person who has traveled to 6 continents, reduced her own shoulder dislocation, got lost in the New Hampshire wilderness in the winter, and loves animals and mountains. I tried not to let breast cancer define me, though it changed me. Trying to destroy metastatic cancer has a way of defining one's life whether you want it to or not - but I think I'm going to try again to be that person I was before and without cancer. 

Fiji - here I come. Carpe all the fucking diems. And fuck cancer.