Thursday, July 6, 2017

Living Eight Years On Chemotherapy

"Hold your breath."

My nurses always say that before they stick the needle in, a habit they can't drop.  When it's a needle in your arm, they say "little stick." When it's in your chest port, it's "hold your breath."  I guess it makes the port stick out, or helps with the jab or something - I don't know.  My port is in my arm and holding my breath does nothing, but they always say it anyway, then apologize.  Habit.

The drip starts and I sigh.

I have a sick cat.  Ironically, I have to give her Sub Q fluids twice a day - a drip bag exactly like mine with the added bonus of three IV meds delivered in the bag port. Reminding her to told her breath won't help - she has taken to hiding in a closet because she doesn't like the needle stick.  People though, we obediently hold our breath.  We don't hide, we walk through the doors to face the discomfort, and even sometime bring our nurses gifts.

Cats are clearly smarter.

A few weeks ago I'd had another scan, and I'd gotten the results from my doctor.  I'm still NED. We were happy, both my doctor and I. But then ... I realized that I may be on this chemo for more years, and if not this one, another. My doctor has said that I am having a neurotoxic reaction to this chemo, causing bone aches, severe fatigue, stomach pain and headaches.  But it's working and he has pulled back as much as he can, stretching times between chemos. We went from every three weeks to every month, and he doesn't feel comfortable doing less.

When  he told me I was still NED, after our smiles faded, I nearly burst into tears. It hit me really hard that this was going to be my life.  Chemo drips and appointments are one thing, but living on a drug that causes pain, anemia, fatigue, neuropathy and toxicity - for 3 weeks a month, for the rest of my life - is quite another.  For literally three weeks after my infusion, I'm quite sick and can barely get out of bed.  I sleep over 18 hours a day.  Everything hurts and the strongest drugs don't really help.  I can't get dressed, or eat.  That last week is when I feel more normal and want to do things. My brain starts up again and I plan - I want to shop, clean, plan a vacation.  But then.....I have to get out of the closet and I have to open the chemo door, and I have to start all over.  I always hope it'll be different this month  - and it never is.  It's not much of a life.

I asked him, "What happens to your other patients who have been on this chemo for years; how long can I expect this?"  He looked at me sympathetically, knowing what I meant, and said something hair-raising, "Nobody in my practice has lasted as long as you on this drug without a relapse, you are the canary in the coal mine."


Two years on this drug.  I've now made it six full years with metastatic cancer to the liver and abdomen and lungs. My original cancer was discovered 8 years ago, and I barely finished treatment before I started again with mets, so in reality I've been on chemo for pretty much 8 years straight, with a time out for just perjeta/herceptin/zometa only.

I wonder if I can even blame the Kadcyla for the way I feel now, although I don't know since I've just started down the coal mine path.   I think my body is just finished entirely. It is telling me that 8 years of chemo is enough for me.

Eight years on chemo.  Is that enough?

People (rightfully) complain when they have four or six rounds - four months worth.  I've had hundreds of rounds.  I know I'm not the only one but google it - you won't find many.  I am in an elite group.

I don't believe it is possible to describe what that is like, either physically or emotionally.  My doctor saw it on my face and he sympathized when I pathetically whined, "Will I ever be done?  What if I'm NED still in a few years?"  He said, "You are almost worse off than somebody not NED.  You're in the same treatment but are always waiting for the other shoe to drop, never knowing when that could happen but knowing it will. We can talk about stopping though, if you are stable in ten years."

Ten years.  I do not think this is possible to do for ten more years.  Is that supposed to be hope?

I understood, having been there - at least when your cancer is growing you are "fighting" for something. You are being brave.  When it's not working, you switch to one maybe less uncomfortable or more uncomfortable, but there is a reason.  The pain has meaning; you are desperately fighting for life, for time.  Now?  It's a way of life.  One my doctor clearly believes I'll never be finished with.  I have achieved the goal of life at least temporarily, but I'm ungrateful - it is not the life I expected. I have won - I'm the person everybody with metastatic breast cancer wants to be - a person who has had years. I have also lost.  It is a life in which I am still breathing, but in which I cannot do most things, enjoy much, and one in which I depend on others for everything.

Is it possible that I am stuck in survival?

These six years have been the longest of my life but here I am with more stretching in front of me. My days are empty, just sleeping, discomfort and so tired.

And yet....there are those moments of joy - I've experienced weddings and babies and happy times. More will come: my stepdaughter is pregnant and we will have a new baby in November. Another stepdaughter is getting married, and my oldest son is planning his family. Next year my youngest will graduate from college, and all those things are miracles that nobody thought I'd be here to see.

But who expects their life to be only those things?  Can one live for only the miracles? Is that good enough?   I'm no longer sure.  I miss doing laundry and shopping and cleaning the kitchen, going to a restaurant, just the simple things that I don't feel healthy enough to do.   My life has been pared down to only a few days a year.

My little cat is 18.  Her kidneys are in failure.  They say that cats are so well taken care of now that they outlive their kidneys.  Like a cat, it is possible that we have learned enough about treating cancer that we are creating people who are outliving the lifespan they were supposed to have?  We can keep people going, but don't know enough yet about how to keep the side effects of treatment at bay.

My cat - it is time for her to go but we are doing all we can to keep her going to see my son once again; her moment of joy.  Who better than I to know that some suffering is worth a future happiness? We found her as a 3 week old kitten in the middle of a street when my son was 2.  She was dehydrated, her tongue was cracked and I nursed her to health with a liver paste she licked off my finger despite the pain. We have had 18 years of her purrs.  After her treatment, she is clearly doing much better than when she was diagnosed - she's eating, bright-eyed, using the catbox and not collapsed like when we brought her in to the vet.

But she sleeps in a closet all day.

Is she happy?  Is she living a cat life?

Am I living a people life?

It will not be long until I take my kitty in for that final shot, I know.

There is no final shot for me, at least until I make the choice to go off treatment and let the cancer come back, as all believe it inevitably will.  Who though, gives up in the midst of success?

It is not easy being a canary.  All eyes seem to be watching me, waiting to see how much I can take before I keel over.  But because I have been given what so many others were denied, I don't think I have a choice but to hold my breath and go on.  

Thank you to all who have used my Amazon affiliate link when doing their shopping.  If you click there before a shopping trip, it gets me a few dollars every month, and since all of my unnecessary but still fun shopping is done online now, it really helps.  Well, it's not all unnecessary - I buy gifts and items for my cat and books for me.  Having a package coming in the mail definitely brightens my day.   Remember to use my link come Prime Day!   Thank you! 


  1. I'm sorry that you're suffering. Having to choose to subject yourself to such a miserable treatment regimen somehow makes it all worse. But although there are no guarantees, I think it is worth remembering, when you're feeling short of hope, that when Kadcyla stops working, your next chemo *might* be a lot easier on you. And if you can stay on Kadcyla a while longer, the next chemo *might* even last you long enough for yet another new chemo to be brought to market that *might* keep you going relatively unmiserably until that ten years is up.

    Okay, so the odds aren't particularly great, and you have plenty of reasons for not feeling hopeful. No reasonable person can possibly blame you for complaining! But odds can be beaten, and you've beaten them before, so you may yet beat them again.

  2. Oh, Ann, I so get this. My chemo (Xeloda) is less toxic but working, I think; two mo CAT on Monday. Nearly two years into unending chemo. Before that, I had 3.7 years of AAs with a quick dash of superfun AC- I was denovo stage IV 1/12. The fatigue is nuts. Luckily I don't have as much pain and nausea as you, but I struggle thinking of the years ahead. Where is the quality? What is quality? I have never been NED and am so happy you are 2 years in. Like you, my answer seems to be riding the fatigue waves, accepting help and what I can and can't do, and trying to focus on what gives joy. But it is so hard. Keep on, as I know you will. But at some point, we all need to ride the final waves, to relax in it and stop treatment. I love that you have so many milestones to aim for. Life without hope and joy is almost no life st all. Wishing you peace, and more good times to come. Sue R ( Saint Paul, MN).

  3. Maybe you've already read this article:

  4. I've just read your story and cannot believe what you have and are still going through! My heart and prayers go out to you and your family. You are an amazing lady. May God watch over you and give you comfort. Many hugs, Tracey B.

  5. Oh man, I know my situation is not comparable, but I feel you. I've been on Xeloda for 6 months after the usual chemo/surgery/radiation, and I'm mostly back to normal life. But I'm exhausted all the time, my hands and feet hurt like a son of a bitch, and the less said about my digestive system, the better. I kind of hate this chemo more than the serious business chemo, because I *look* normal. I'm going to work, hanging out with friends, my hair is mostly coming back... but I feel shitty. And I'm waiting to find out if things are going to be ok or not. And I have wondered how I will deal if things aren't ok and I have to be on chemo for the rest of my life. I focus on the good stuff, of course, but there are days when it hurts too much to walk to the mailbox, and I wonder if this is really a human life. And then I think of everyone who has it so much worse than me and feel dumb. Oh well.


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