Monday, January 25, 2016

Tomorrow there'll be sunshine and all this darkness past...

There's really nothing quite like watching a frozen river during a snow storm.  Seeing  massive chunks of ice creep along in front of the Pittsburgh skyline is a very dramatic sight, especially from inside, where it's warm and toasty.  

A few of you received advanced notice that my options have run out and I've decided to take advantage of the services that hospice provides at home.  My last post talked about a few possibilities that I was going to pursue.  These didn't really work out.  The doctor in Virginia who specializes in proton therapy turned out to be a disappointment.  About a week after returning from that very long road trip over the busiest travel weekend of the year (Thanksgiving), my breathing took another dive and I could not walk and breathe at the same time.  I spent about a week in the hospital while the doctors tried to rule out some obvious causes for the problem -- blood clot, infection, collapsed lung, excess fluid, etc.  The verdict was the same as it was when this first became a problem in the summer:  my lungs are shot from progressing cancer and over 30 local treatments to control it over the past 15 years. Any additional radiation or ablations would do more harm than good and I'm not strong enough for more whack-a-mole attempts to stay ahead of this.

I had some tumor samples from the lung surgery in 2012 tested for genetic mutations to see if any experimental drugs might help slow things down.  This also turned out to be a dead end.  Even if there is something that might help prolong the inevitable for a few months, I've had more drugs to fight leukemia from 2009 through 2011 than anyone can expect to withstand in one lifetime.  

We knew this day would come.  I've been lucky to have made it this far with my history of 3 serious cancers.  I'm now on oxygen 24/7 and I can't leave my apartment on my own two feet.  My breathing problems make it difficult to talk, so I've limited my communications to email.  I'm also not the type of person who wants people around when I'm sick, so these factors have led me to request that people not come to visit.  It's easier on me in about a dozen ways, so I thank those of you who have respected these wishes.

I spend my day managing my symptoms, watching DVRd TV shows with Mary, as she works hard at being the world's best caregiver, and petting Sadie as much as she will let me.  Watching the news and the ridiculous political campaigns keep me pondering what kind of world I'm leaving.  I hope I'm around to see Donald Trump go down in flames. Hey, my blog, my opinion, my last wishes!  

Along with Mary's daily visits to keep me sane, the hospice team comes almost everyday too and they are all wonderful.  I wish they didn't have the reputation of call-only-when-the-person's-about-to-croak.  I feel that hospice workers are misunderstood.  They can provide help that no one else can and with experience and compassion.  Knowing I will no longer receive any treatment, I don't have to worry about doctors' appointments, medical tests, or decisions about where to go next.  I'm very grateful for my team here and the care I'm receiving.  The goal of hospice is to make me feel as comfortable as possible.  

It may take several months for my body to call it quits.  Or it may not.  I feel like my body deserves a rest and I'm not at all afraid of dying.  I will leave this life knowing that I have given it my very best shot -- chasing down doctors, medical techniques, research, and advice from the amazing community of ACC patients all over the world.

I know that most people fear everything about death and dying -- even talking about it.  Much more destructive than death, in my opinion, is denial.  Denial will wreck you.  When someone tells you that they've made a decision about how to live or die, don't deny them your support and unconditional love.  Most people, in their grief and anticipated loss, just don't know what to do or say.  It's hard for everyone. But it's mostly hard for the patient.  Here are a few dos and don'ts when it comes to things to say to a cancer patient (or about me):    

1.  "She lost her battle to cancer."  (Read here.) The implication is that I just didn't fight hard enough.  Nothing could be more offensive.
2.  "God never gives you more than you can handle."  This is another annoying cliché.  The God I believe in would never test people to see how much they can handle.  How mean would that be?
3.  "Everything happens for a reason."  Really?  Bullshit.  This is one of the most insulting things a cancer patient can hear.  Classic Blame The Victim.
4.  "What is your prognosis?"  Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.  
And the list goes on....

The problem is that people don't have any good examples of helpful, loving ways to express support instead of these unhelpful blunders.  A better approach would be to ask them what they need and how you can help.  Then listen to what they say and do it, whether you agree with it or not.  It's their illness, not yours.

And now that I've rambled on and on, I can't say for sure if this will be my last blog post or not.  As with everything in life, we should assume that this moment is our last and cherish what we have right now.

As long as I can stay in the present, I can honestly say that I am happy that this will soon be over.  It's hard for my ego not to make a mental wish list for my next lifetime.  My faith is in the Higher Power that resides in all of us, so I'm good with whatever comes next.  I'm hoping that if I end up on Earth again, I'll have better hair and dimples, but who's to say that would make me happy?  For now, I'll watch my DVRd TV shows (suggestions for binge watching are welcome), enjoy Sadie and watch the river just outside my door.  My energy comes and goes, so please forgive me if I take a while, or can't, respond to your messages.  Know that they are received and appreciated.

I want to thank all of you for your love and support when I've been sick and when I've been well.  I'm a very lucky person to have known all of you, even those of you I've never met in person.  Take care of your bodies, take care of each other, take care of the planet.

I love you all.




  1. You are a very good writer, Kathy. I particularly like your take on hospice. I'm a huge hospice advocate, and think you're 100% on point. I used to work at AGH, and had the occasion to have many wonderful conversations with a couple of hospice nurses, and believe that they truly do God's work. You're right about how people tend to recoil at the mere thought of death, and yet, it occurs to me that that must be incredibly painful for those who are about to pass from this mortal coil. Not that I imagine that you want to talk about it every minute, but how could you NOT want to talk about it? That's what's going on for you! I've always been of the mind that death, for all the painful aspects that it may bring, is probably the most fair thing in the world. It's something that absolutely EVERYONE will experience, right? I've got to tell you, I am deeply moved by your openness, honesty, and humor. My wish for you is that each day will provide you with something awesome to look at from your incredible vantage point; that you will take comfort in the love of Mary, Sadie, your nurses, and all your friends; and that the end of your journey here will be calm, and peaceful. I love you, dear one.

  2. Kathy, it's Dr. Ziemke. I know you have been through so much and have always been courageous and positive. It is with a heavy heart that I read this, but your courage and positivity will always live on. I wish you peace and rest and not having to suffer anymore. It has
    been a privilege to have known you.

  3. Kathy, it's Dr. Ziemke. I know you have been through so much and have always been courageous and positive. It is with a heavy heart that I read this, but your courage and positivity will always live on. I wish you peace and rest and not having to suffer anymore. It has
    been a privilege to have known you.

  4. Kathy-Thank you so much for sharing your story, you are a beautiful writer. You have been through so much and I was truly moved to read about it. I like your message about living in the present and I think that is a great lesson so many of us forget about. I hope you spend every day living in the present and enjoying every minute of it and do what makes you happy.
    -Janet Bolante

  5. this was hard to read, but very gracefully written.loosing freinds and family is always hard, but i've also learned by walking along side them, that it isn't something to be afraid of. praying that you continue to have peace and be comforted.

  6. Kathy--You are my inspiration and one reason I am much less afraid of this cancer and what it can do to me. I hope you know this--and how we all feel about you in our ACC community. I know you didn't sign up to be our "comforter" but you are mine and MANY others. I certainly hope this is not your last blog, but if it is, know that it changed me for the better. I pray for peace, calm, and rest for you when you are ready. Blessings, my friend.

  7. I wish you peace at whatever life and the afterlife brings takes great courage to battle cancer, and a greater courage to know when you have had enough....sweet blessings to you!

  8. Hi, Kathy. I fondly recall talking to you at LS about your desire to spread word about your form of cancer and reading the op-ed you wrote about it. I've thought of you often in the days since we both left the firm and always look forward to reading your blog posts. Your optimistic yet realistic take on cancer has been inspiring to me - and this post is no different. I wish you much peace as you ride out this last chapter, and please take heart in knowing that your story has touched many, many people. Thank you.

  9. Dear Kathy, hopefully you will be able to write more in your blog. And please make sure your blog will be available in the future for upcoming generations of ACC patients! I guess this would be a nice heritage. And may your wish come true regarding D. Trump. You probably have 600 million followers in Europe ��

  10. Dear Kathy, you are a remarkable person. I have been amazed by you though out our friendship with your ability to navigate this world. I have been inspired by your example of when and how to fight and, now, how to gracefully surrender and accept. Know that you have left an indelible mark on others in this life. Godspeed my dear friend. Eliza (Arf!)


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