Sunday, September 4, 2016

Dead iPhone

Did you think I was sick or dead?  Who could blame you - it has been a long time since I've written. I'm not even sure where I left you in this grand saga of life, death, and daily trivialities.

I'm here but my iPhone has died. I've had an iPhone since they first came out in 2007, before diagnosis,  and I've faithfully bought one every 2 years.  I have been transferring everything over with each new purchase.  And, my 6+ died, data gone, pictures gone, memories gone.

I'm still here, without my electronic helper.  I do remember having a PET scan sometime this spring, which came out clean. NED, nada, no cancer.  Lightening luck struck again.

It was last October 2015 that cancer had exploded through my system: abdomen, liver, many lymph nodes; it even creeped into my lungs.  I thought my final destiny had arrived.  I was calm at the thought of relapse, not freaked out or upset.  My stomach dropped, and I knew what was coming, but I felt like I could have good luck again, which I did.   Kadcyla entered and cleaned up the cancer like an OCD person cleans his hands.  Scrubbed raw, no visible cells left.

Six months later, when what is now chronic pain intensified, yanking my intestines and kicking my ribs like a petulant child, I knew it was cancer returning and the Kadcyla giving up.  Hence the springtime PET, which by the way, I had to fight the insurance company to get.   I not only thought it was cancer returning - I was absolutely certain. I actually told people cancer was back, before I knew it was.  I had no doubts at all, and started doing my planning again, refreshing my death papers, rewriting passwords, etc.  I finally got the scan approval.

The PET showed I was clean.

I was shocked.  I still had the mystery of the pain, which caused emotions I'm not proud of.  Like frustration and anger.  Yes, I was actually angry that I did not have cancer.  I was mad that I didn't know what was going on with my body. I was embarrassed that I fought for a test that I didn't need.  I was petulant when I told my doctor, "Since I don't know when pain is cancer or nothing, I'm not even mentioning it anymore."  He gently said, "You have to."

I know it sounds crazy, to be mad at good news.  I couldn't admit it to anyone,  and I couldn't figure it out for myself.  Given time, all I can come up with to explain this fury is when you wait for something for years, when you know what your fate is supposed to be and you believe now is the time -  you can feel upset to discover you are wrong.  Even when it's something horrible like cancer spreading.  

I also questioned my entire place in the cancer community.  Am I even a cancer patient anymore, really?  I go in for chemo every three weeks, like a cancer patient.  I have pain like a cancer patient. I have a port, I have fatigue, I have nausea and constipation.  I am on my 9th chemo regimen.  Look at all I've been through.  But I don't have cancer now.  I look healthy, I have more energy than ever.  I have been NED almost as long as I've had cancer.  So, where do I fit in now?  I'm healthy AND sick?

What if I'm on the leading edge of people who survive metastatic breast cancer, thanks to immunotherapy? Doctors now say it is becoming a chronic disease, and perhaps that is so in my case.  I was close to death, more than once.  I never want cancer again, of course. And yet, in a strange way, my identity has become tied up with this disease, and in waiting to die. What if now I have something controllable, and its no longer a certain death?

Who am I then?

I felt angry:  for not having a "place" anymore, for not being able to read my body, for not even being certain I did have a terminal illness anymore, for all of it.   I was so angry - and so unable to explain it - I stopped blogging, stopped posting on facebook, stopped reading emails, stopped thinking.

I settled back to my life. The anger dissipated and I started to understand my feelings more.  The pain lessened too, the meds worked better.  So, I did household chores:  I cleaned an organized my craft room.  I painted and regrouted a bathroom, and painted and scrubbed the kitchen, things I've not been able to do for half a decade.   I now have weekly hair blow-outs, even though I am still mostly at home. I get a monthly "art box" where I get a project to do.  I turned my back on cancer, as much as I could.

But I needed to find a way to feel useful.  I also need to make some money, so I am now crafting items to sell.   This is complicated:  I have to spend the money (a lot of money) to make the items, then once I get enough I have to figure out exactly how to sell them so it doesn't cost me too much or I can even make a profit (which looks less likely each day).  Margins are already thin.  But it is an interesting problem. (No, I don't want to do Etsy or eBay - paypal takes enough!).

I have written out a schedule of things I want to do, including some writing. I've had a booklet planned for years, designed to sell that I've never sat down to write.  I also need more household things done - porches cleaned, flowers planted, weeding.  I am trying to be productive, as if I had just retired early and wanted to be home instead of working.

October is coming and there are editorials to write.   I am trying to get my chemo-addled brain functioning - I do a puzzle every day.  I'm trying to get up at a more reasonable time.  I am trying to remake a life that I'd previously given to disease.  I still live for today, and appreciate each beautiful thing that happens.  But now, I think about the future just as you healthy people do.  I have made reservations to take my son and his wife to Vegas for his 30th birthday.  I wonder who will speak at my younger son's graduation in 2 years.  I am happy to hear that my older son and his wife will try for children in a year or so, and I even freaked out thinking that their child may not be in the elementary school down the street, so I can pick her up at 3:00.  I am thinking that if we have money left when my son graduates college, my husband and I will take a trip somewhere we've never been. Maybe Europe.  Maybe Australia.  Maybe Bali.

I again worry that my husband, who is 11 years older than I am, will die first.

Normal.  I'm not angry now, I have accepted my place, once again.

I wonder though - if Kadcyla stops working and cancer comes back, how will I feel?  How many feet into normality do I step?

As I said above, my iPhone died, it just completely bricked. I couldn't get anything off of it before it went, and the genius bar people couldn't help me. I lost almost 8,000 photos, and all my contacts, my blog ideas, daily reminders. 9 years of my life gone.

So I have a choice:  I can mourn what is in the past, what is lost, and maybe be angry that what I thought would happen did not.   Or I can acknowledge it, take a deep breath, and start fresh.

Five years with mets, and I'm starting fresh.

Thank you to those of you who use the Amazon box to the right to start your shopping.  It helps me greatly.  If you don't know, just start your search for anything on Amazon on my page and I get a small percentage of what your purchase.


  1. Wonderful. Just a wonderful, perfect, honest post.

  2. Starting over clean sounds wonderful!

  3. Hi Ann,
    Great to hear from you. Not sure what it says about me, but it doesn't sound crazy at all to feel mad at good news. It's all about the processing, which is exactly what you did. Love your pen making plan. Why don't you make them available for sale right on your site? Readers might be interested in buying. Just a thought. And sorry about all the recent phone issues. I know I need a new phone. But as usual, I am procrastinating, 'cuz I hate the process. And I have so much stuff to delete on my present one. But your experience makes me want to get at it before mine completely dies. Sigh... Thank you for the updates. Starting fresh - that sounds like a good plan. xo

    1. Get your phone taken care of, because I feel sick everything I remember something new I lost.

      Trying to figure out the selling thing's not easy!

  4. Thank you for the update, Ann. I always feel so happy when you get good results. It gives so many of us hope. Your feelings are understandable. You've gone through many ups and downs with this illness and it's rational to want some steadiness. Glad you chose to start fresh (and you deserve this). Wishing you and your husband well, always. xoxo

    1. Thank you! Maybe it's crazy to believe I will always be healthy but that's where I am now. Sometimes I look back at all the issues I've dealt with and I think it must have been somebody else....

  5. Thank God! I kept checking in and the lack of posts was alarming. Glad you got good news but also understand the anger. It's like the getting the ultimate jerk around (even tho the news is good!) Sorry about the phone--no cloud for you I'm guessing? There are privacy concerns of course, but so great to be able to recover data no matter what happens to the phone/laptop. looking forward to more posts!

    1. Dumb me - When they started charging for iCloud I said Nope, because I didn't want my husband to have another revolving charge to deal with. Stupid stupid. I have *some* stuff there though. At least, I hope I do....

      Thanks for understanding my point. It's wonderful that no matter what I say or how awful I think it is...somebody understands.

  6. I'm so very relieved you're alive and well!

  7. Lovely to read your post. Totally understand all the fear and uncertainty as to where you fit in. But what a lovely problem to have - though frustrating of course. I think in our world we are frightened to hope. A period of ned makes us question whether to be glad or cautious that it's not really true. I am currently stable which is the best us with bone mets can hope for. But does that mean I should consider myself 'normal' or should I still live life under the cancer umbrella? I need to be more like you and try to reclaim my life. But it's hard when I work full time and am always so damn fatigued. Maybe I can try and work through it and start ticking off my bucket list. You inspire me and that's a very special gift to have. Good luck with your new business and I look forward to becoming an active customer!! It helps that I'm a pen snob. I can't use just any cheap pen. So your new inventions are perfect for me. Xx

  8. I was told nothing had changed. I was good. The nurse told me remission. When the dr. Came in and asked why we were so happy. I said I'm in remission. He said no. Give me your Ibrance and we will stop the Letrozole shots and we'll see how long you live. Not long. You are a cancer patient whose cancer is stable. Btw I have terrible pain too. Consequences of all the chemo and radiation.

  9. Beautiful post - thank you for sharing it. I am reminded at how our emotions are complex and how we can never truly predict how we will react - no matter how much we try to plan. Sending you hugs and well wishes for continued remission :-)

  10. Ann, this is a wonderful problem. Yes, I can see where there would be a huge mental/emotional adjustment, but it's a good problem to have considering its alternative. Always rooting for you. xo

  11. After reading your blog posts from the beginning, I just wanted to thank you for taking the time to share your thoughts, perspectives and helpful ideas. You're not only an excellent writer, but funny. After reading about your family of origin, I was wondering how it affected your relationship with God? I know I can't change your heart, but if you seek God honestly, He'll find you. Just wanted to share at this pivotal point in your life.

  12. I so relate to this post and frankly it couldn't have come at a better time for me. I too have stage IV metastatic breast cancer but thanks to immunotherapy and numerous chemos (abraxane/carbo and now Xeloda) I have seen the cancer slowly disappear. I've been in a lot of pain and could have sworn my cancer was spreading but results from last PET showed reduction vs. progression. I was surprisingly mad at this and like you I question who I am in the cancer community. Both healthy and sick. I don't want this but dealing with the daily mind games of knowing you are fated to die earlier than expected has made dealing with this news weirdly difficult. Anyway, I love your blog and thank you so much for posting.


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