What can happen in five years?
A silly, long-haired 12 year old boy grows to become a lanky, bespectacled, scary-smart 6 foot tall man, packing for the start of his elite university education and possible career as a scientist. A young man, 22, struggles in a low paying retail job until he too attends school, gains a fiance, now has a career rather than a job and a bright, solid future ahead. A husband gets a little more slumped, a bit more grey, worry lines mixed with smile lines, but he retires from his own career and gets to play a little more golf and watch a whole lot of baseball. One stepdaughter finds her own sort of family and career success. Another marries, grows more beautiful by the day, has a baby. And as the first of a new generation is born, the hopes of a crazy, disparate family are joined together, glued by that smiling, giggling baby face.
What will he see in his lifetime? It will surely be amazing.
But really, I'm glad he doesn't have my genetics.
And, me? I am still here. I have made it to the five year mark, as only 30% of women with metastatic cancer do.
I sat on an exam table half a decade ago and heard the words, "you have cancer." And I have sat on exam tables hundreds of times since. That paper rustling under my butt is now the sound of "home." Did I have metastatic cancer back then? We'll never know, but it is likely I did.
August 17, 2009: if I had thought to five years ahead (which as an ADD woman I didn't) I guess I would have felt this blog would be long abandoned, left for other early stage women to find and discover what I experienced, eventually to deteriorate with neglect. I thought my husband and I would still be working, paying for my son's college (we did suspect he would go to a top five university - we got that part right). I never doubted that cancer would be a mere blip in my life, and I would be back to normal, working in a school, meeting new kids, laughing with teachers, calming the parents, and fixing the damn copier at least a hundred times a year.
(Why can't teachers take care of copiers?)
But then cancer was discovered in my liver, and my life as I knew it, and my future ended. It took a while to regroup and redefine myself. Who am I now?
A person without a job, a purpose, a future is .... what?
These five years have been dominated by disease. Having cancer is a full time job in itself, and I hung on to my employment by my fingertips, but eventually, I had to open my fingers and drop. I was too weak from treatment to work and even if I had not been, just the sheer number of appointments would have made any employer rightfully throw me out the door.
In five years, there are 260 weeks. I would estimate I had about 200 doctors appointments, considering primary care, oncology, surgeons, plastic surgeons, radiation oncologist, infectious disease specialist. Additionally, I would guess that I've had 20 MUGAs, 50 CTs, 10 PETs, a bone scan here and there. There were more weeks than not that I've had two appointments. I've had mastectomy, reconstruction, port placement, liver resection and ablation, fiducial placement and SBRT. I estimate I have sat in the chemo room over 150 times, watching the drip, drip, drip of one of the 7 different chemos, 3 targeted therapies, and dozens of other drugs to keep me from barfing, or awake, or feeling pain, or anxiety.
Being metastatic, this five year mark does not mean anything special. For the 80% of women with early stage ER+ cancer, the five year mark is the date that the odds of relapse drop dramatically at - it becomes the time where you are more likely to be in the winners bracket than not. (For HER2+ women, because the cancer is so aggressive, it's 3 years. I didn't even make it to 2).
So for me, it's just a day like any other day.
And yet, over the past few years I've had to redefine myself. And, I am still doing it. My job as mother will be mostly over when my son leaves for college although it has been half-assed for the past few years anyway. I'm lucky I had the kind of kid who was self-sufficient. I can no longer work in any real way again, as I continue with the ups and downs of treatment. I have two drugs infused every 3 weeks, and another infused every month, one which causes severe anemia. That means I'm sick and exhausted for a week, recovering for a week, feeling good for a week and then I start all over. I can't be housewife, as I'm too tired. I felt good a week ago and took all the stuff out of the bathroom cabinets. I had treatment. Now it's on the floor where I left it.
Friend is difficult unless you catch me in the right week and I don't try hard because, like every ADD person, I believe the day I am today is the way I am forever.
Planning is not my forte.
I am a very good sleeper. My cat likes me a lot.
Of course, I'm very happy - this day is not one I was sure I'd see. I never wanted to die although I accept it as a fact of life. But it seems farther away now.
There were signs I could get lucky: my cancer did not respond well to all of those chemos and yet it also never spread beyond the liver. Like me, it was lazy. When we cut out half my liver to get rid of it, it got mad and grew back, but then it didn't keep growing and spreading. It grew just enough to say "F you" and then stop. My blood took the hit of all the treatments, and so my doctor decided to attack it locally again: with SBRT radiation. At the same time, we started Perjeta which does affect my blood but is a surprise gift. That one-two punch, though, put me in remission and here I am, five years from the day I heard the fateful words, and now expecting to be where I was at the beginning:
Cancer-free, yet wondering when it will return.
Unlike those with early stage cancer, the odds are extremely good that it will return - in the 98% range. But the addition of perjeta makes that number a mystery. It's too new a drug. Nobody knows how long it will work, or what it will do to me if I stay on it long-term. We are in no-mans land here.
Once again, I'm an early adopter.
I have had to redefine myself. Sadly, I am what I never wanted to be: I am now a cancer patient above all. Unfortunately, there is no chance you can have as many appointments, as many interactions with cancer, or a body that is continually assaulted with therapy as I am without it becoming part of you.
So, I am wife, mother, cancer patient and not in that order. Hopefully, I am the kind of cancer patient who helps others as they experience cancer. So I answer every email I get, every facebook contact and try to be encouraging. All I can do now is make the best of a bad situation. The idea I had five years ago, that I would experience it and move past it - it seems very unlikely today.
You never know. Maybe someday I will get to redefine myself again. Life is a continuous process of growth and change. But for today, I am a metastatic cancer patient who has lived five years with the cancer, and I hope to help others. Maybe that's my ultimate purpose.
That's the best I can do.
Pain and Frustration
1 week ago