Sunday, August 17, 2014

Five years......

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.


  1. I have been following you for years without making a comment. I'm a 2 time breast cancer survivor and I've been one of the lucky ones (almost 9 years since being diagnosed with triple negative). You are a rock star!

    1. Thank you so much. You can tell I was pretty tired writing that, I think. Your nice words mean a lot. I hope you stay one of the lucky ones!

  2. You are more inspiring than you know! Thank you for keeping up this blog through it all. It's been a great source of, well, inspiration! xo

    1. Thank you Renn. You've been a faithful friend and I appreciate you. :)

  3. You're a comfort to me, a fellow Her2 positive sister, though not metastatic so far. The advent of drugs like perjeta and TDM-1 is enormously exciting. I'm so glad the perjeta is working for you.

    1. I agree, we are in a new age with HER2+ cancer, and that's a good thing. Thank you Dr. Slamon.

      FYI: Please don't add the word "yet" to your sentence. I don't think women should think they don't have mets "yet," they should think "I don't have mets, thank goodness!" :)

  4. Me alegra mucho leerte, siempre eres muy positiva :-)

  5. Ann, you are a great inspiration. I do not have cancer but a quite disabling chronic disease, but I am so greatful for your advice always and how you talk about 'redefining' yourself. It is SO helpful what you write. Thank you.

  6. I didn't think your writing was off, on the contrary, as usual you write so that pretty much anyone with this disease can relate and find words of encouragement. Thank you for doing it even when you don't feel 100%.

  7. Ann
    yes this is a milestone, not in the typical sense that most people think about ( 5yrs=cure) but big nonetheless. I am so happy that the cancer has decided to retreat and that the new drugs are working for you and hopefully for a long long time. Your writing is beautiful even on your so called "off" days! all the best Roz

    1. First off, Thank YOU for taking the time to write and share yourself. I am new to your blog but not new to breast cancer. I was first diagnosed with Stage 3a, HER2+ breast cancer in 2010. Had a lumpectomy, radiation, and chemo for most of 2011. Including all the nasty chemo drugs - in fact I was to do 12 weeks of Taxol and had to stop after 2 doses because I developed blood clots in my lungs. After this, I felt like a true hero - I had beat it and even after such an aggressive cancer and battle, I had done it! Then last Spring (2013) I started to have these back pains that wouldn't go away. Tried an MD, (only to get pain pills that made me sleep) a chiropractor, and finally a physical therapist. No luck in remedying the situation. Until one night, in the middle of the night, I woke up in excruciating pain and went to the ER. After some pain meds and a cat scan, IT was back. Now Stage 4 and in and through out my liver and a few spots on my lungs. Started chemo again and this time with Taxol and it landed me in the hospital. I almost died - I had a severe allergic reaction. Lost all the skin on my hands and feet and the blisters in my throat were so bad I had to have a feeding tube put in because I could not swallow anything. Now almost 1 year later, I am here, tired and sometimes pretty blue, but I am here. My oncologist decided that there was no way my body could handle the Taxol ever again so we had to do the next best thing - Perjetta and Herceptin every 3 weeks. It has been everything a miracle drug could be for me. In fact I was able to return to work in late March of this year, full time. I have been plugging away since. I am a single mom of two high school boys so its a damn good thing I could go back to work - they eat us out of house and home!! I just wanted you to know - we share this common theme - Metatastic disease, Perjetta, and the unknown. I have scans every 45 days and so far they have been fantastic. I struggle with not having near the energy I used to though. I just recently started taking exerscize classes again only to find how incredibly hard they are. I just want to stop but instead I push. It can't hurt and I keep thinking it will give me more energy for the next day. Who knows if it ever will. I am 39 and I still have tons of living left to do - I don't have time to die now! I am so terribly sorry you are so sick - I remember when I was and I wanted to give up. That is raw honesty right there. I wanted to just quit and pass on. I still get angry at times - you know the whole, "Why the heck did I get picked on for this?" You mustn't be so hard on yourself. You are a great friend for even writing this column and continuing to write it. I am sure you are and were a fantastic mom. I expect that my boys will just have to understand and I think they do. Especially since I have never remarried and have been divorced for 10 years. I will keep you in my prayers (I know you hear that from everyone and it gets so redundant) but honestly, I will. When I pray for all my loved ones and myself at night, I will include you. I can't wait to read some of your previous entries. Its like a huge gift to have your words of wisdom to read and ponder. So thank YOU, from the bottom of my heart.

  8. Hi Anne,
    Gosh, reading all that you've been through summarized really makes me stop and marvel at how you've persevered through it all. I can't figure out how you've managed to write so eloquently through it all with such wit, sarcasm, and humor. I guess we all keep redefining ourselves. I keep writing and blogging as I approach my five year mark which is coming up next spring. How long will I keep at it? Who knows? I figure I'll know when the time is right to stop. Anyway, I'm glad you're still blogging, although of course I wish you could have stopped if that was your original plan. Cancer sure messes with our plans doesn't it? Your blog continues to help many women and sadly, there will be more coming. Never doubt the impact you make with every blog post and all the other stuff you do too. Keep writing. We'll keep reading. Your best is pretty darn good.


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