Sunday, December 1, 2013

Letter to 19-year-old me

Dear Alex,

Well, today's going to be a fun day. First off, I fully support your decision to take extra time on your hair this morning--it is vital that the doctor know just how important your hair is to you. You also are rocking your outfit today. Victoria's Secret Pink sweatpants and a blue ribbon tied in your hair=no one would ever know you had surgery a couple weeks ago.

In retrospect, I can assure you that the little fight you will have with Dad has nothing to do with how long it took you to get ready this morning. Though you have no clue what an oncologist is, trust me, Dad does, and he might be a little worried about his daughter and how quickly her doctor recommended she go meet with this oncologist. Right now though, the only connection you've made is that if chemotherapy might be involved here, chemo=no hair, and so it's very important that the doctor see just how pretty your hair is.

Fair warning, today's going to be a crazy one, and yes, you're going to get your blood drawn so just accept that. Now, when you arrive at the hospital, you're going to be handed a stack of papers to fill out before you head up to the doctor's office. I don't know about you, but if I were reading them, I'd find your jokes funny, so I say continue with them. Nothing says, "I'm 19 but clearly have the sense of humor of a 12-year old," like responding to the question, "Do you cook your own meals?" with "I try not to ever since I set rice-a-roni on fire." As you sit and answer all these questions, ignore the fact that most people will probably think you are there supporting your dad and that you are the youngest patient by probably 15-20 years.

Now, here's where things get fun, Alex. The doctor will see you now. You can go on up to the oncologist's office and bear with the fun that comes with every visit when you are dealing with a gynecological oncologist. Let's just say, you'll learn not to be shy very quickly with doctors.

Though this is only one of the first times you will recall this story, be prepared to share it now and take note of the pieces that all feel essential to include:
  • I kept getting the "stomach flu" often, and I had these recurring fevers. (Be sure to use air quotes.)
  • I tend to think I'm a hypochondriac so I was convinced I would go to the doctor, and he would tell me I was making it up.
  • Finally, one day I realized I couldn't suck my stomach in...and I was nervous if I got on the metro someone would give up his seat for me and my baby, so I figured it was time to go to the ER.
  • I ate a cheeseburger and chocolate ice cream the day after surgery, and it wasn't until after surgery that I realized just how awful I'd been feeling the past couple months.
One part you include that you will learn not to mention in the future: "It's so nice to know what it feels like to be healthy."

The oncologist will listen to your story, and he will explain how he reviewed your surgery report and feels it is somewhat incomplete which is why your doctor sent you to him. He will proceed to show both you and your dad a diagram of the female reproductive system (oh yes, he's going to do this with you and your DAD) and point out the ovaries. Don't forget, you only have one now so basically you should feel lopsided...just kidding.

Then, the doctor will begin to explain that he recommends a 9-week course of BEP chemo. He will write it down on a notepad, and he will show you how the cycle works. Bleomycin, Etoposide, cisPlatin. (The p is actually really because cisplatin has platinum.) You will have one shitty crazy week (he will not phrase it this way for you, but hey, I'd like to give you realistic expectations about this week) where you go to the hospital for roughly 5 hours a day to get pumped full of drugs; then you'll have two "off" weeks where you only go to the hospital on Mondays (you may think that on these Mondays the other meds will have worn off, but no, these weeks will also be pretty exhausting). Lather, rinse, repeat 3x, and your chemo treatment will be done. Sounds pretty easy and straightforward, hey?

When the BEP explanation ends, the doctor will look at you and ask, "Do you have any questions?"

...and you will ask the only question you can think of: "Yes, do I have cancer?"

At this, your doctor will pause, and say, "No one told you? Yes, yes you do." (This may make you regret saying, "I'm thankful I don't have cancer" at Thanksgiving. Don't worry, you'll laugh about this in the future.)

You, Dad, and the doctor will continue to talk a little as the doctor explains more details about the upcoming nine weeks. He'll share statistics that make it seem like a no-brainer for why you will definitely do chemo. Something along the lines of without chemo, the odds of the cancer coming back is 85%. That doesn't sound very good. He'll recommend you begin chemo in just over a week, and that time is of importance, so as much as a trip back to DC sounds great, you should put that on hold for now.

All of this sounds fine. 9 weeks. I can travel afterwards, and what was I going to do in cold Chicago for the next 9 weeks anyway?

Then, your dad will pause and tell the doctor: "She wants to know if her hair will fall out."

Get ready, despite the fact that you've read that some people don't lose all their hair during chemo, you're about to lose composure. Chemo? Sure. Hair loss? Nope. Not happening.

Doctor: "Yes. All of it."

...and the tears begin to fall. To be more specific, you will not just cry a little; this will be the kickstart of floods of tears. You should not have put mascara on today. Between this and the phone calls you will make later today, be glad you have no reason to see anyone today.

When Dad asks the doctor what he would do, if there are other treatment options, he will give you the answer you need not only to agree to chemo but to trust this doctor 100%: "I have a daughter, and if she were in the same position, she'd be starting chemo ASAP."

...and now the nurse will come in and give you all kinds of information about chemo, prepping for it, the appointments they'll be scheduling for you, and more. You will learn about the side effects of chemo (there are a LOT, and the fun ones include a higher risk for other types of cancer...). Remember to mention your extreme fear of needles--this will allow you to opt for a PICC line instead of a port which means you won't be dealing with needles every time you go into the hospital. As the nurse talks, you can begin mentally drafting your to-do list; that's totally normal.

Alright, so the doctor's appointment is over. Now, here's where I have to be honest, 19-year-old me, this is where things get fuzzy. I don't remember what happened in what order. As you're in the car, you will begin making phone calls. I'm not even sure who you called first. Was it Chris? That seems to be logical, but I don't remember how you told him. At some point in the next few hours (or maybe the next few days? I really have no concept of time here) the following things will happen:
  • You'll go to Megan's house. She will immediately offer to shave her head with you.
  • You'll make a to-do list with the items labeled "A" for Alex and "D" for Dad.
    • Note: I'm still not sure this is a normal response to a cancer diagnosis, but hey, who am I to judge?
    • Dad will be 100% convinced you're crazy when you explain to him that all of these things need to get done so you can be ready for chemo.
  • You'll text your friends and family to ask them to call you when they are free. The first several times you say, "I have cancer," you'll cry. A lot. You may even pass the phone to Dad since you can't get the words out, but that's okay.
  • Some friends will be very busy and ask that you explain what's going on via text. Despite your better judgment you will text the words, "I have cancer," once you've exhausted your attempts to get them in person on the phone.
  • You will email your friends overseas and wake up in the middle of the night to talk to them. ...or maybe it's the middle of the night for them. Talking to Bobbie, Liz, and Becca will be slightly heart-breaking, but you'll also be so very grateful for them.
  • You will try to go shopping at Nordstrom. Retail therapy. 
    • New UGGs and Juicy sweatsuits=perfect options for the hospital. Your venture into the hat section? Too soon. 
    • Dad's willingness to throw down his Nordstrom card without hesitation will tell you two things: 1. You have a wonderful father, and 2. This may be retail therapy for him, too.
  • The phone will ring. ...and ring. ...and ring. Calls from the pharmacy (clearly noted on the to do list and labeled with a d? Go pick up Alex's 1400 new prescriptions), calls from family and friends, calls from nurses, and more calls from the pharmacy and doctor's office. Each time the caller ID says, "Evanston NW Hospital," you dread picking up. Eventually, you begin passing the phone to Dad.

...and that's where I'll stop today.


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