First off – yes, I’m alive.
Even though my blogging frequency has been pretty pathetic recently, I still get a steady trickle of emails from concerned readers who miss me. It’s an odd feeling knowing total strangers want to make sure I’m okay and miss my writing, but I do sincerely appreciate it (even if I don’t reply, sorry). It also makes me realize that not everyone follows my twitter feed, so many of you have no idea what has been going on in my life.
No, it’s not just grad school that’s been keeping me busy. These have been the hardest months of my life.
On March 15th, my mom called me. My family knows I hate talking on the phone, so when my phone is ringing and it’s not a holiday, I assume something is wrong. Usually that’s just my irrational anxiety talking, but unfortunately this time it was right. It was news I never wanted to hear – my mom had cancer again.
She had been cancer free for 8 years, after winning her battle against breast cancer during my senior year of high school. I hate to say this, but I had never been truly worried during that time. Part of it was knowing they caught it soon and that she had wonderful doctors, but part of it was definitely being a naive 17 year old. At the time I didn’t realize it, but my parents had painted a rosy picture of the situation to keep me from worrying. What I remember is my mom scheduling her chemo appointments around my high school golf matches, because she didn’t want to miss them for the world. The worst of it was kept behind the scenes.
But now I was a little bit older and wiser. In this case, being a geneticist was not very comforting. I was more aware of the realities of a cancer diagnosis, especially when cancer had come back. But I tried to stay cautiously optimistic, since there was still no official diagnosis. I focused on finding any way I could to make her feel reassured, rather than it being the other way round like last time. I looked into all the herbal remedies because I knew she felt much safer using these than traditional medications. I found a great detroit fudge company that made tasty snacks containing cannabis, which I genuinely believe had curative powers after all the exciting research being carried out on it at the moment.
A week later one morning, I was laying awake in bed worrying about my mom. My phone rang, and this time it was my dad. Getting a phone call in the morning is even more terrifying, and I knew instantly from his voice that something was horribly wrong.
He told me my mom was going to die within hours.
Hearing that out of nowhere, while stuck thousands of miles away across the country, was… I don’t even have an adjective that can describe that. Horrifying? Devastating? I was literally in hysterics, sobbing and shaking for hours. It felt like a nightmare come true. I’m so glad my boyfriend had been there, because I don’t know what I would have done without his immediate support. In the span of a week my mom had gone from perfectly healthy, living the stereotypical retired life golfing in Florida, to “going to die.”
A couple of days earlier, my mom had fluid (caused by the cancer) removed from her abdomen, and that change in pressure had caused massive blood clots to move from her legs to her lungs. “Why didn’t the doctors check for that ahead of time?” I asked myself. She couldn’t breathe. She had a 10% chance of making it, but thankfully our hometown hospital is one of the top 50 in the nation and had a cardiologist present that specialized in dealing with this problem. Also thankfully this happened at 7am on a Sunday morning, so the emergency room was empty. Who knows what would have happened to her if she hadn’t been the only patient there.
She survived. I flew out the next day to be with her.
Even though the clots had been removed, there was little emotional relief. When I got there, we were bluntly told that she may never wake up from sedation at all, or if she did she could be a vegetable. The first thing I saw when I arrived was that her tongue had swollen to grotesque proportions, filling her whole mouth and spilling out. The doctors still have no idea what was going on there and originally blamed the tape holding her breathing tube in, though my dad and I suspect they accidentally gave her antibiotics that she’s allergic to and wouldn’t admit it. When I noticed her face was starting to swell as well, they ignored me…until we had come back from lunch and her whole head had swollen up. It was devastating seeing her like that – seeing someone you love and thinking “that can’t be my mother.” Once her whole head was ballooning up, they finally admitted I had been right, and maybe they should start trying to reduce the swelling. Yeah, you’d think.
(I wish the tongue thing was the only time we dealt with incompetence from doctors and nurses… They constantly ignored call buttons for 30 minutes to an hour and I had to go run and find nurses in emergencies, they tried to give her medicine for other patients which thankfully my dad caught, they tried to give medicine in her left arm despite signs everywhere saying not to do so, some wouldn’t use gloves and were obviously not using sterile technique, doctors fought in front of her which destroyed her confidence in them… Yes, they saved her life, but at the same time my faith in doctors has definitely been shaken.)
Thankfully again, my mom beat the odds. After a couple of days she woke up. We talked by her first pointing to letters on a sheet, then by her writing, and after weeks she was able to barely speak. I can now say that months later, she can talk fairly normally and has all of her mental faculties. I feel like I can’t even thank science or medicine here – she got lucky.
The problem was, you know, my mom still had cancer. And the equivalent of a massive heart attack followed by aggressive weekly chemotherapy is not exactly a good situation. She was getting chemo even when she was still bedridden and unable to walk. She was in the hospital for 90 days, but thankfully has been home for about a month now (and is still getting chemo). Just imagine not being able to leave a hospital room for three months – no sunshine, no idea if it’s day or night, no food (thanks to the swollen tongue)… You don’t even realize the little things you take for granted, like being able to cuddle with your pet or wear your own pajamas.
As for the cancer, the chemo does seem to be working very well, which makes me rejoice. We were glad to find out it wasn’t breast cancer again, because that would have been the worst prognosis. Unfortunately, it was ovarian cancer, which is scary in its own right. We have no family history of breast or ovarian cancer, but having both occur independently in the same individual is a huge red flag that the cancer may be heritable – that is, that her genome has some mutation that predisposes her to that type of cancer. If correct, that means I would have a 50% chance of having that same mutation.
My mom could honestly care less what her genome is, since it wouldn’t really change her treatment (“Yep, you still need chemo”). But she wanted to get genetic testing for my sake. Thankfully her results said she has normal copies of BRCA1 and BRCA2, the two main breast cancer genes. Having a mutant copy of one of those greatly increases your odds of getting cancer, so hearing that news was a relief. But to a geneticist, it was a minor relief. I knew there were dozens of genes that could contribute to cancer, and dozens more that we probably haven’t even figured out yet. This just ruled out the common problems.
After my parents told her genetic counselor that I was getting my PhD in genomics, the counselor decided she would just rather talk to me directly. We chatted on the phone and she discussed how she wanted to test a larger number of genes, especially since gastrointestinal cancer runs in my mom’s family and may be related to her case. She told me her current problem – getting my mom’s insurance company to okay the test. She explained how insurance companies don’t like tests that utilize modern technology like next generation sequencing, because they rather have you pay a deductible on each individual gene than have one test that covers the whole genome.
(Yeah, they rather squeeze more money out of their dying cancer patients than do an efficient test. I never had any faith in the insurance industry to be able to say I lost it, but let’s just say my rage against them has grown. At least my parents have insurance, because after a month of treatment alone the bill was at one MILLION dollars. It’s horrible enough worrying about my mom’s health; I’m glad I don’t have to worry about their sudden bankruptcy as well.)
But I knew something this genetic counselor did not. I told her that Mary-Claire King, the scientist who discovered BRCA1 & BRCA2, worked in my department and did a cancer gene panel that was twice as large as the one the counselor was considering. After the counselor got done fangirling and squeeing over Mary-Claire (no, really, nerd glee), she asked if I could try to get my mom enrolled in MCK’s study. All it took was one email, and minutes later MCK had said yes. My mom no longer had to worry about insurance, she would learn more about her genome than from some company’s test, and she’d contribute to a growing body of knowledge about cancer genetics.
While I’m relieved to know I’ll have this information, it has been an emotional process. Part of me is terrified for myself. I’ve seen how cancer has affected my mom. The physical weakness, the loss of hair (which can really hurt a woman’s self-esteem), the inability to eat (how I wish Indiana had medical marijuana or that I lived in Canada so I could use an online dispensary such as https://www.canadacannabisdispensary.ca/ and others, or that I could smuggle some from Seattle or texas). Not to mention the giant cloud of doom reminding you that, yeah, you may die from this. It really scares me wondering if I’ll have to go through the same thing when I’m her age, or if I’ll get unlucky and it’ll strike me sooner.
And at the same time, I feel guilty for worrying about myself at all. I feel selfish worrying about what might happen to me in 30 years, compared to what’s happening to my mother right now. I feel guilty that I can only visit her a little bit before I have to come back to work, even though she’s told me that me finishing my PhD is the most important thing to her. I feel guilty that my dad has to be her full-time caretaker and home nurse now, while I get to go “back to normal.” I feel guilty every time I have a moment of happiness when I’m back in Seattle, because I feel like I should always be worrying about her.
I’ve never been good at prioritizing taking care of myself, but now it feels damn near impossible.
And that’s partly why I’ve been so depressed the last couple of months. Worrying about my mom, worrying about myself, feeling guilty about worrying about myself… I wish those were the only things stressing me out, because I could barely handle those. My boyfriend is graduating with his PhD this year (yay!) but that means we’re worried that he won’t be able to find a job in Seattle and will have to move far away (not yay). Grad school has been rough (which is a redundant statement, right?). I’ve been feeling very lost and without guidance for a while now, since my project is very unique and I’ve basically created it from the ground up (or as another grad student told me, I went straight from undergrad to a postdoc). My current experiments aren’t working, and even though troubleshooting lab work is totally normal, it can be crushing when you’re already down. It makes me feel like a failure and an imposter who shouldn’t even be in grad school. My lab is also having some funding woes, so I feel a lot of pressure not to screw anything up or waste supplies because we may not have the money for a round two. The cherry on top is that the two other grad students in my lab are graduating in the next month, so I will be the only graduate student left. I already felt lost and alone, but now it’s just going to be me, my adviser, and our research scientist.
The problem with depression is that even if you have understandable reasons to be depressed, it can make you unreasonable about everything else. I have particularly bad anhedonia – nothing really give me any pleasure. When asked to list my hobbies, I list things I used to enjoy. I have no motivation to do anything, even “fun” things. Getting out of bed in the morning is a chore. I haven’t had an appetite in weeks, but I just keep feeding myself because I know I have to. I had convinced myself I had no friends who actually cared about me or wanted to hang out with me, which turned me into an even more lonely hermit. I’ve lost all of my goals and dreams, and when I think about the future I just despair. Every news article or opinion piece I read just makes me think how fucked and unfixable the world is, and I feel hopeless to do anything to make the world better.
And the fucked up thing about depression is that it convinces you that all of this is true, and you are the problem. Depression is like having sunglasses glued to your head and insisting the world is dark, even when you rationally know its bright. I was literally convinced for months that there was no hope in the future and that I would never feel happy again. Right now I can’t remember what it feels like to be happy. It wasn’t until yesterday that I had a small moment of clarity when I realized that my brain was lying to me. Not only that my brain was lying to me, but that I had gone through this exact thing before! There have been many times in my life where I’ve felt this way, but happiness and motivation and normalcy always came back eventually. It would take time, and perhaps medication to get through it – a friend has been suggesting medical cannabis to me, and after I Read more about the options for taking it that aren’t directly smoking i’m curious, but I think i’ll go for more traditional methods. Regardless, I need to remind myself that this too shall pass. All I need is a little help, and to stay focused.
I’m attempting therapy again (thank you, Secular Therapist Project). At least this time I’m pretty sure they won’t suggest Buddhism and spirituality as the solution (no thank you, University of Washington mental health services). Unfortunately, the health insurance they give us grad students is kind of crap, so it looks like I’ll be paying mostly out of pocket for it. But thankfully I have a good amount of savings and just got a raise (thank you, National Science Foundation) so it won’t be a huge issue, and I’m trying to start viewing my mental health as something worth investing in. This isn’t a pity call for money – if you feel the urge to donate, pick your favorite cancer research charity and that will make me happy.
I don’t really have a take home message or wrap up for this post. I simply realized that writing has always been therapeutic for me, and when I quit blogging I threw away that therapy along with a social support network (you guys!). I’ve been meaning to get this off my chest, so here it is.
Dear life: Please stop sucking soon.
kthx,
Jen
67 comments
Charly says:
Jul 28, 2013
Jen, you have my deepest sympathy, I understand exactly how you feel.
Hope things get better soon.
otrame says:
Jul 28, 2013
Jen,
Somebody upthread mentioned exercise. Take that advice. I don’t think they have pinned down exactly why, but it seems to help with lying-brains. Besides, even if that is all annectdotal nonsense, it’s good for you anyway. Remember, no situation is made better by you not taking care of yourself.
As for the rest, you have my sympathy and my hopes that your mom makes a complete recovery.
marybellamy says:
Jul 28, 2013
I know that this thought has been expressed above, but as a mom who has had breast cancer, I want you to know that you should never feel guilty about worrying about yourself or about enjoying yourself. The thing we want most is to be able to protect our children, and particularly our girl children from this one. We want to make it possible for them/you to have as good and as joyful a life as possible. If one of the contributions we make to that is as a genetic warning, then so be it. And, yes, if something, anything, makes you smile, think of sharing that with your mom and dad, that’s what will give them smiles too. Hugs.
MadHatter says:
Jul 28, 2013
Aw Jen, that’s a lot to be dealing with. I can empathize with some of it, and you’re not alone in feeling this way. Hugs to you and your family.
meanderwithme says:
Jul 28, 2013
Hi Jen — add me to the list of those who’ve missed you and your writing. As much as I’m glad to see you back, I so wish the circumstances were different.
A few things:
1) Cut yourself some slack for worrying about your future health. Yes, your mother’s current situation is big and scary. But you know those guys who tell women to shut up about sexism because (insert big, important issue here)? Yeah, you’re trolling yourself. Quit that shit.
2) Depression sucks. My first episode (that I recognize, anyway) hit in 1997, but it took until last year for me to get the correct dx of bipolar II. Apparently most folks with recurring depression have unrecognized BPII it makes sense, I guess because, who goes to the doctor to complain about feeling awesome? Anyway, I had the manic-depressive stereotype in my head, so I read reluctantly when my counselor recognized the signs and suggested I research. And whaddya know — my life suddenly made just a little more sense. I still battle depression even now, but at least it’s less severe (different mess), and I know it’ll pass. It may fit you. It may not. Either way, it doesn’t hurt to check it out.
3) Yup, depression lies. One of my favorite bloggers writes about her issues often,and I love you for sharing your truth without shame. That takes a crap-ton of vulnerability and bravery. For when (ha) you have time to read, here’s a good post of hers — one that I hope will help you feel like you’re at least not alone.
The Bloggess — The Fight Goes On
Virtual hugs,
Allison
Morgan says:
Jul 28, 2013
I’m so sorry to hear about your mother, and so relieved to hear she’s doing well (or at least better) and to hear from you at all. I hope this is the start of things getting better for you – you deserve it.
Lee DeLay says:
Jul 28, 2013
Jen-
I just am managing to come out of a 3 month (ish) depression and while I am starting to feel better and more myself your description of depression brought me to tears. I know what that’s like, I gave up a slot in a phenomenal masters programme because I felt like I was too worthless to doit and that the was no point in even trying. I sincerely hope you start feeling better and that your mom does as well. Cancer is terrifying enough without dealing with everything else on top of it.
You can get through this, while I’ve never comments on your blog before I read it often and you’ve come up many times with the Portland skeptics and freethinkers as someone that is a great researcher and skeptic. We can live without posts when you need to take a break and your readers are here when you need support.
<3 ill buy you a cup of tea next time you're in Portland if you like – or coffee if you prefer.
AndersH says:
Jul 29, 2013
Hi Jen,
All the best to your mother, your family, and to you.
I can really relate to what you wrote about being oblivious as a teen when your mother had breast cancer. I was a couple of years younger, but went through the same thing. I can’t even remember going to the hospital after her mastectomy. Luckily, she survived and has been cancer-free for the past fifteen years. As I’ve become older I’ve been shocked at how emotionally detached I acted (not even trying to find out her situation and prospects, and I think my parents were generally quite quiet about it too. Since both my grandparents died of cancer (but after age 80) I realise there is a significant chance of the cancer coming back or a new showing up as she gets older, and if it happens I hope that I’ll be able to be there for her and for my family emotionally, which is most important, even though my career might take me away physically from attending to them at all times. Your post definitely brought home a bit more directly that that time might one day come, so that helps.
I’m happy that I don’t have to navigate the US insurance system, but the piece-meal privatization of Swedish healthcare has certainly had an effect on the complexity of our system as well :(
Regards,
Anders
MadDissector says:
Jul 29, 2013
Lots of virtual hugs from Scotland! I am so sorry to hear about your mother, and happy that she is getting better… Don’t worry, or feel bad, because you’re worrying about yourself so much. I can understand how it is: my maternal grandfather, like my great-grandmother, suffered of one kind of dementia that begins early in life. Grandad died with more than 80, would not recognize people he didn’t meet daily and could turn rather aggressive when faced with facts he didn’t remember anymore. Great Grandmother died in an asylum for the unstable. Ever since Grandad was diagnosed years ago, I have seen how my mother worried herself sick, dreading that she may have inherited it.
It’s good to get news from you…
kestra says:
Jul 29, 2013
I’m so sorry to hear about your mother and your stress & depression. I have followed your blog since before FTB, and I’m always eager to read your posts no matter how long you are on hiatus. I also want to tell you how much I admire you, being in Grad School and Doing Science, like I sometimes wish I had done. When I’m feeling like I haven’t accomplished anything and am wasting my time as work or in life, I try to focus on what I have done (got a degree! am financially independent!, & etc.), even tho they don’t seem like much now, I remember what a big deal it was at the time and that helps me. I hope things get better for you!
John Horstman says:
Jul 29, 2013
Wow, I’m so sorry you’re experiencing a heap of awfulness. I know what the depression’s like, the rest not so much. I wish you a speedy return to wellness.
Ian says:
Jul 31, 2013
So sorry to hear about your mom, but glad to hear the chemo is going well.
As for the rest, it’s good that you are seeking counseling and doing things that you feel are therapeutic. I hope that works out for you. Just remember that worrying about yourself is a PERFECTLY NATURAL response and that feeling guilty for things like that won’t help anything. As you said, just knowing something is bad doesn’t really help with depression, but there it is.
Ack, I can’t really tell you anything you don’t already know. But still, as someone who has read your blog since the Purdue days, I want to say that it’s definitely good to hear from you again, and as you can see from all the responses so far, you have all our sympathies and best wishes on speedy, healthy recoveries (for you both!).
imnotspecial says:
Jul 31, 2013
I am so saddened to read about your story. I am an old guy but I always find your posts inspiring and helpful.
On the hallway wall of the farm house I grew up in hung a picture of a lit up candle and it said:” Whenever you think you cannot go on anymore, from somewhere a small light will appear”. This has helped me many times. For someone as smart a you are this certainly will come through.
On a practical level, it appears to me that you need at least a 3 week holiday, preferably in Europe with all its art treasures and history, and have a good rest. Sleep deprivation leads to depression.
Best wishes and wellbeing to you and your family.
Gunter
Shawna Jaquez says:
Aug 1, 2013
I have depression too. It is horrible and a lot what you are saying rings true with me.
You are not alone.
— Shawna, also a depressed person in the Greater Seattle Area
wscott says:
Aug 5, 2013
Sorry you’ve had such a rough few months! Let me add my voice to the chorus of people who have missed your postings, are glad you’re back, and hope the rest of the year goes better for you!
dianemccarthy says:
Aug 6, 2013
I’m so sorry you and your family have had to deal with all this. My very best wishes to your mom. And count me among the many who had to cope with chronic depression during grad school. It got better for me (with the help of some meds), it will get better for you, too.
Frankly Miller says:
Apr 27, 2020
Do you need a personal & business or Investment funding, without stress and quick approval? If yes, contact us today as we are currently offering loans at superb interest rate at 3%. Our finance is secured and safe. Our customers happiness is our strength. loans from the tune of €5,000 -€1,000,000.00 USD Euro and Pounds, available now are Business, Personal, House, Travel and Student Loans Etc. For more info Send in detailed loan proposal(Loan amount, Country and loan duration)
Loan Officer.
Best Regards
For Urgent Response very much available send her messages Via WhatsApp +346(3269)6888 Or Via Email: franklymiller417@gmail.com
Monday-Saturday:7:30am-6:30pm {Processing time}.
Sunday:12noon-6:30pm {Processing time}