As soon as a person is diagnosed with cancer or suspected cancer, this train ride starts. If the diagnosis has been made or seems certain, it's a ride on a bullet train. From the day I first went to the CNM with my suspected lump until I got "the call" and had my pathology read to me, I experienced a mammogram, ultrasound, biopsy, and MRI. Those were 5 expensive days! Within the next two weeks, I'd had a full body CT and MRI, another biopsy, surgery for a port, two appointments with an oncologist, and chemo school.
After those early weeks, though, the train slows down. During active treatment, I guess I felt more like I was on the Little Engine that Could.....
Lots of work to do, lots of diligence, constant struggle. Eighteen weeks of chemo, bilateral mastectomy, 8 more weeks of chemo, 28 radiation treatments, reconstruction, and reconstruction revision. But there was a concrete goal. And that goal was getting through treatment and putting the whole experience behind me.
How naive. In reality, there is no putting the experience behind. In reality, once you get on the cancer train, you are always on the cancer train, at least when the cancer of concern is one without a cure. And there is no cure for breast cancer (among many others). Treatments can leave a person with NED (No Evidence of Disease), but they can't cure them. Some people remain NED. Others don't. And here is no way to tell whom will be whom. Or when one will change from NED to ED.
And that's the class of passenger one becomes after completing active treatment: NED, with a transfer ticket that may or may not get punched.
Waiting to get a hold of that transfer ticket is every medical professional who you come in contact with. My first experience with this was when I was having some knee pain and the professional I had consulted suggested an xray because with my "history, we can't be too cautious." That was a little nerve wracking, but it was over within minutes, before I had a chance to get worked up.
Then late last fall, I began to experience a minor, niggling pain on the side of my right "breast" (which is in quotes because it really isn't a breast, it's a saline filled balloon housed inside a pouch of numb flesh and stitched to periosteum. In clothes, it looks like a breast. Otherwise, not so much. But I digress. I'd felt something similar in the past and that had led to the last surgery I had, the revision. So, off I trooped to my plastic surgeon. Nope. She wasn't so convinced. In fact, she said, "That's not your implant. That's your rib. However, my guess is that since you haven't been exercising--especially doing upper body work (which I hadn't been doing due to a nasty and lingering case of tendinitis of the elbow), that this is lack of muscle tone in the muscle holding the implant in place and that's why you have this little twinge which is ameliorated by wearing a bra....but let's get an xray just in case." And she assured me that she'd call me if there was anything untoward that showed up in the xray.
Not being pleased by the "I'll call you..." part, I did try to call her office three times and never was I able to get past the guardian at the reception desk. Now, this doctor, as wonderful as she is, has a very busy teaching practice at a medical college and sees patients at the medical school/hospital. She is not the "hot robe, spa in the next room" kind of plastic surgeon. She rocks, but her accommodations are not highly luxurious. And she doesn't hire the receptionists. They are hired by the hospital.
Anyway, I couldn't get beyond the wench at the desk, and I'm not a retiring flower. However, I certainly wasn't effective. Regardless, as the weeks went by and I heard nothing, I figured it was nothing. And, the pain didn't get worse and barely even qualified for pain. I had more discomfort in my breasts during my menstrual cycle or while pregnant.
Then, the train pulled into the station again this past Wednesday. Shortly before I was to begin teaching my second class of the day, while I was standing outside my classroom chatting with a few students, my cell phone rang. I saw that the caller ID was my oncologist. How curious. I stepped away, answered, and it was the incredibly nice, super efficient receptionist from the cancer clinic saying that they'd gotten a message to call me to set up an appointment about a questionable chest xray.
"Whaaaaa?" Yes, indeed, here was an area of concern that required further study.
Apparently, the xray from nearly two months previous had been looked at again (I don't know why...I presume since this is a teaching hospital that it was used for teaching?) and a questionable area...again...given my history...was identified.
I was gut punched. My mouth was dry. My heart was pounding.
My onco, the wonderful Dr. Mo, was put on the line and she read me the report...something about an irregular blah blah blah at the junction of blah and T-something or other blah blah blah." She then said that since she'd just seen me (two weeks ago) and I had no symptoms, no pain in my back...um...in my back? No. Never. And this area was where a rib joined my spine....and I had no pain....she wasn't worried, although she did admit, "This is easy for me to say because it's not my xray being discussed."
xray?" I. Don't. Know. Why would I? I know I've had them before. I've had pneumonia several times, but it had been a long, long time.
Since there were no more recent xrays to compare, she suggested I get a bone scan. And then I got to talk to the wonderful Tiffany again, who suggested perhaps I could come in that afternoon. THAT AFTERNOON!!!! I was certain they thought I was riddled with bone cancer. No one gets in for a test within the hour like that. When I had the xray done, I had to wait 1.5 hours. No, that wouldn't work. I had a class to teach, a kid to pick up from school, life...so I did some finagling and called back. It was scheduled for Thursday morning.
I then spent the rest of Wednesday running from class to class. It was an incredibly busy day. Busier than most. I really didn't have to time to process. But by the time I got home, I started falling apart. By the time the kids were in bed, I was sure I was going to find out that I had bone mets. Breast cancer mets typically kills in 2.5 years, give or take. Bone mets is incredibly painful and debilitating. I was a wreck. I was popping Xanax like candy. It wasn't taking the edge off.
I told a few close friends. This was all made worse by a very realistic nightmare a month or so ago where nearly the exact same thing happened.
My appointment was at 8:00 am. I met a friend there. I got my radioactive injection. I started itching like I always do when they shoot me full of radioactivity. We ran errands for two hours. I returned for the scan. I was sure I saw areas light up on the scan. I was convinced I was going to get bad news. And I astutely watched the technicians, listening very carefully to all conversations going on around me. The only thing that kept me sane was that, unlike what I'd heard from others about their scans, no one came back and said, "We need to take a look at......again...."
That was one of the longest days of my life. I was on my way home by 11:00 am. Exhausted. Worried. And yet, life just kept going on. I had to go home, run errands, take a kid to the dentist...do normal things.
NORMAL THINGS?!?!?!?!? I was waiting to hear that I was entering the end stage of my life and I was supposed to shop for pop tarts for my son to send to his friend studying overseas and take my 16 year old to the doctor for a check up? I was supposed to plan what to have for dinner and actually execute it?
Yeh, that wasn't happening. I needed to be happy. So I bought myself some age inappropriate Hello Kitty ear phones because for some reason I can't fathom, Hello Kitty makes me happy. Hello Kitty is so not "me" but she makes me happy.
Couldn't face much more after that. Took the boys someplace to eat. I don't even remember what I ate. Came home, ate more Xanax. Sent people to bed. Facebook chatted with friends, wondering how I was going to feel when I got the bad news the next day. How would I tell the boys. How do you face your 11 year old and tell him that mommy probably wouldn't be alive to see him start, let alone finish high school? How would I bear to be bald again? Would I be able to maintain the really super crappy teaching schedule I have this semester and do chemo or rads? Rads?!?!?! My schedule is so chopped up there isn't time for rads. What day would I choose to do chemo? I teach M-F...Friday would be the easiest day schedule-wise, but that would make my crash days at the beginning of the week, when I'm most busy. How can I bear to let my kids see me die the way I've seen my friends die? Will I wear a wig this time? Would I even do treatment since I feel so good now and why would I want to do such a toxic treatment that would make me feel so shitty only to die? Wouldn't I rather go out on top?
Even with Xanax on board, it was a long, long, long mostly sleepless night.
Then I couldn't wake up this morning. Waking up meant facing reality. Reality wasn't what I really wanted to do today.
I did finally manage to get up and get out of the house and make it to the meeting I was obligated to go to. Not that I wanted to be there or that I cared. But I went. Just as the keynote speaker was getting ready to start, my phone rang and it was the oncologists's office.
Good news! The bone scan indicated No Evidence of Disease! My buddy NED is still with me. I made the nurse practitioner read the report to me three times. NED. NED. NED. NED.
Relief. But also guilt. Why am I NED and so many others aren't so lucky?
Now, I just need to keep away from airport security and police for the next day or so since I'm full of radioactive stuff, drink a gallon of fluid each day to flush it, and get on with life. A good night's sleep would be a good place to start.
I will not be able to do this many more times. I simply don't handle hoping for the best and preparing for the worst very well.
Meanwhile, I continue on the train with my traveling companion NED, and I hope NED is with me for a long, long time.