Tenured Breast Cancer Student- Jeanine
Name: Jeanine D. Cohoon
Age at Enrollment: 36. I’m 37 now.
Major: 1st round: Stage 2B Invasive Ductal Carcinoma, Triple Negative 2nd round: Stage 4 metastasized Brain and lymph cancer
What were the primary symptoms you experienced prior to diagnosis?
My first time, I found a lump on a business trip, and my armpit was sore. My second time, I was preparing for more reconstruction surgery, and I started getting dizzy. Instead of stressing out my fabulous plastic surgeon's malpractice, I decided to get checked out.
What symptom(s) lead you to go to the doctor?
Consistent dizziness. Any symptom that's consistent and doesn't change is bad.
Last time, I did. . . THE RED DEVIL! Four rounds of AC - Adriamycin Cyclophosphamide, a medicine so nasty you're NEVER ALLOWED TO TAKE IT AGAIN. I then did another four rounds of Taxol, a medicine suspended in a yew tree extract that everyone is allergic to. This time we are going to try four doses of another chemo, I don't know the name yet. I also did a double mastectomy with reconstruction last time. We've already one one round of Cyberknife Radiation on my brain, which was one of the NEATEST things Ive experienced. Anything without a needle is already a plus. I have one more round of that. This will hopefully shrink the lesions in my brain without harmful effect so I can feel back to normal. Just in time for my poisoning! We will likely do radiation on my armpit after or during chemo as well, to make SURE we lick every cell. I don't know if we'll do a full removal of my lymph nodes or not. I anticipate we will, but not until after chemo, since it will delay my surgical recovery.
What has been your biggest struggle since your diagnosis?
First I felt like I was in the wrong reality. This cant possibly be real. This isn't supposed to happen. Now Im just trying to drift until Im not so dizzy, and euphoric on the medicine. My family tends to live well into our 90s and die of hate. My husband and I have this home and a mortgage and this thunderbolt of a five year old daughter, and I suddenly can’t make them any promises. My first round, the phrase "highly treatable" kept cycling, and everyone was very cocky, optimistic, and pleased. This time, no one wants to look at me. I’m starting to get past the terror and make real, measurable headway on what I have to deal with, but the looming life changes are staggering. Will I be disabled? Will I die? How do I make this worth it for my child?
What was your hardest moment (or moments) thus far and how did you you get through it/them?
My husband. The way he looked at me was crushing. He is always, annoyingly right. And this time, he looked at me like I was going to die. If there’s one argument he desperately wants to lose with me, its this one.
What has been your biggest accomplishment since your diagnosis?
Diving in again. Laughing. Drinking a Pepsi every day. Steroid-cleaning my house. Putting on a decent lipstick line. Staying upright. Taking my daughter to a play date. Normal life has continued to carry on blissfully around me and I haven't caused it too much misstep. Here's hoping that continues.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore?
Anything other than a doctor, and even some doctors. Doctors are people. My doctors were about as crushed as I was to see me back in their office. I think some of them cried. My radiation doctor had to handle me in the middle of a breakdown, and she has the bedside manner of a preying mantis. It makes them awkward, and they don't like having to say some of the things they have to say. Make them do their job. You pay them. They work for you. They're as functional for you as a mechanic, or a housecleaner. They might not even get it right, or have all the info. You have to keep track, you have to listen to them, and you have to tell them EVERYTHING. If you can't, get someone to help you. I was spoiled with my husband; he spent the last several years caring for his mother until she passed this year of renal failure. Now he gets to be my advocate. Hes brilliant, hes detailed, and he is an effective researcher. I try to take notes and keep everything as organized as I can; appointments, medicine, information, but it is already overwhelming. If I could rent him out I would.
How did your family and friends respond?
Overwhelming. We had the intimate sharing first. My mother is already dealing with my grandmother going through the same thing so shes getting it on both sides. I was the first person with serious cancer in the family, so to have mine come back, in such a concerning fashion, . . . I cant fathom how she feels and I hope I never do. She also happened to be one of the premier estate attorneys in the region, so in addition to being my mommy, she has given me a really practical, honest way of looking at situations like this. We're going to work together to prepare for the worst, and hopefully get through to the best. My friends are insane and I love them. We just lost two other friends in our circle over the last year to metastisis around my same age. I have this crazy circle of performers, circus freaks, corporate folks, and everything in between circling me like a love tornado. I met most of these people over the last 15 years during a few volunteer and performance stints at local renaissance faires in my region. I am so grateful for this network of interesting people. I really hope I can make this process interesting for them in return. So far they’re telling me I have. That's all I want.
Since your diagnosis, what does it look like to you to “get back up”?
My radiation doctor keeps asking me why Im not taking weeks off with my family. Bitch, I gotta go to work! My job provides my insurance, which provides my care, but its also what I do. I love working. Its been difficult to focus lately with this whirlwind and appointments, but I’m really looking forward to working through chemo again. It kept me alive.
When you feel overwhelmed or anxious, what do you do?
I eat! And I talk. Im a sixteen year old girl with my phone. I text my friends constantly. I clean. My stepson graduated this year and moved out, so we put a workout room in his old room (his bed is still there, it just doesn't smell like a boy anymore :-) ). If Im going to be jacked up on steroids, terrified for my life, and worried about brain tumors, I might as well have a six pack. . .
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis?
Honestly? Not much. I was the first real cancer in my family. I'd had HPV previously and gotten a hysterectomy (I had my tubes tied after my daughter was born, so when abnormal cells showed up on my cervix, they allowed me the full monty). Then when it all happened, we didn't do a lot of research, because everything went so well. We didn't know the high return rate of triple negative cells (some research suggests over 60%). We certainly didn't anticipate remote brain metastases. I came home from my MRI in an utter haze. Now that we've looked, and we know what we're dealing with, it’s pretty scary. Not many people beat this. Most have a never ending game of whack-a-mole in their brain to look forward to. I also didn't know that once you have things like brain lesions, you're typically not allowed in all those neato, cure cancer studies and trials. You're a dead person. We don't study dead people.
What do you now want people to be aware of?
This happens, and its awful, but it can always be worse. Something seriously bad has happened to me. I have a daughter who might lose me. I have a husband who is trying to prepare for life without me, because it might actually happen. The only thing I could've done differently is been a bit more prepared, and gone back for more voluntary scans. As far as we know, I didn't do anything to wish this on me, and I was a very healthy person, who hadn't taken the time to buy disability insurance yet, or private life insurance to cover my family in case I was hit by a lightning. Now I'm uninsurable. Look at your life, prepare for the worst, so its easier to live for your best.
Have you created any meaning out of this experience? If so, what was it/how did you do it?
Ive been starting a kind of campaign. I call it, "For Your Information." Ive been posting pictures of my treatments, my medicines, my scars, and anything else I think people should see. I don't want this to be shameful or mystical. I wanted people to see my ugly medical bra, my drains, my pile of medication, and how things have gone. Its been really demystifying, and people have really responded. I always enjoyed being on stage, performing, and getting attention. Ive been able to make this an attention-getting experience, that also has educated, at least a little bit. It feels wonderful, and Im really hoping anyone else living through this who might not be as obnoxious a show off as I am gets some of that wonderful feeling too.
How did/do you find joy during this experience?
Friends. Food. Living a bit more. We had a lot of parties last time. We shaved my head, we did henna on it, I went out and had lots of guests. Im hoping we can do that a bit more this time around. My husband isn't quite the butterfly I am, but we have a lovely home and I love sharing it. Our garden also poops out melons like crazy so having people over to eat them all last summer was really helpful.
Since your diagnosis, what new belief, habit or behavior has most improved your quality of life? How has your diagnosis informed your life?
I'd already changed a few things since last year. I took my family on a couple little vacations. I was taking the last Monday of every month off to spend just with my husband. My daughter started kindergarten and Ive been trying to get her into dance lessons. Things I wouldn't have done before, or spent money on, or taken time to do. I whipped off the other night and whisked her to a play date. Ive started target shooting with 22 hand guns and paintball. Im looking into maybe an open mic night at a comedy club or something silly like that. Life is a little faster, and its kind of nice.
Did you learn anything about yourself or your life? If so, what was it?
I had never, ever, in my deepest of life’s depression, considered suicide. My very first chemo dose in 2017, the steroids hit me so bad, I was refusing to go back. I was able to look my (at the time) four year old right in the eye and think she was better off without me. I’d never been in that spot before, or even remotely considered it, and it was educational. I went back and immediately talked about how it felt and we cut the steroids. Everything after that. . . . was kind of bearable. I learned to accept how I cope with things, that showing off and feeling awful are ok, and so long as I get up the next day, I might as well do it again. What else am I doing, anyway?
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of people, what would it read?
IT CAN ALWAYS BE WORSE - this is my life motto. Any time I feel awful, or down, or crushed, (sometimes I just wallow for a minute because that's ok), I picture some poor starving kid on the fundraiser commercial, who ALSO has my problem. Being starving in a third world country doesn't mean they don’t also have my problems too. Know what, Jeanine? THAT kid has problems. And he’s not crying like a little bitch in a puddle like you. I mean, he's in an actual puddle, but seriously. Suck it up.
When I did radiation, I was escorted into the bottom of a local medical facility. The room was nicely appointed, with lovely laminate wood flooring and wood trim accents, and sciency shit affixed to the ceeling. Two lovely techs had my lay down on a medical bed, asked me what music I wanted (I joked and said David Bowie), and locked a perfectly fitted, mesh cage to my head. They then locked me in this room behind a foot thick door and left me alone. I couldn't open my eyes or move a millimeter. For the following hour, I was graced with the disconcerting sound of compressed air hissing, a motor wirring alarmingly close to my head, and silence. About 20 minutes in, suddenly I hear very quietly, "Ground Control, To Maaaajor Tom. . . " Apparently the techs had just remembered my music request. The magic of the moment wasn't lost on me, and despite my caged treatment, I managed a decent chuckle. Another 40 minutes of nothing, and I was all done. I was given a piece of paper to show any emergency facility I might stumble into how much radiation I received, and sent on my way.