THE TIMELINE – Marilyn Armstrong

Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.

The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.

The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.

I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?

Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.

That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough, it is supposed to make you feel better. It doesn’t.

The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.

Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.

Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.

I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.

I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.

I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.

I want to be able to move and not spend most of my life fending pain.

I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.

So, following the holidays, it’s time for a long, complicated talk with the doctor.

I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.

Sensible ideas are welcome. I have choices to make and it’s time to make them.



Categories: Arthritis, Cancer, Health, Heart, Medical

Tags: , , , ,

75 replies

  1. What a heartbreaking and utterly frank post. I really have no words which would help in anyway, it must be awful living with such pain, and I think you are incredibly brave; an inspiration. Long may you continue. I hope you and people far more qualified than I can find a way through the pain. It’s made me question wether knowing your “time” is a good thing or a bad thing. I suspect it’s an impossible to answer.
    Keep on writing and bringing pleasure!

    Like

  2. i totally understand your willingness to try anything. why not?

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  3. I can and do “like” this one, but only because counting your blessings and evaluating your options before the hard choices need to be made is something we all need to do.

    I was born with multiple birth defects which they did their best to repair, but which have left me envying anyone with ease of movement and who know the joy of running with ease all my life.

    I hate being the green eyed monster of jealousy, and have managed to come to terms with my limitations while defying the odds and the forecasts for my life span lo these 58 years.

    Being willing to give in and rest and go on disability at age 55 was quite an eye opener. While still working and fighting exhaustion, I’d made arrangements for a bucket list trip, to the Australian Great Barrier Reef. During my well patient visit for trip insurance coverage, my going away present was COPD medicine and a conversation that there was nothing more he could do for me with today’s tech, and a reminder that I really needed to reconsider having a lung transplant.

    From there, I tried all the heavy duty medicines, and they caused vision and pain issues, added to my full body rashes and found that the blessing the medication represented did not make up for the curse of complications they also embodied.

    No easy answers here, but a suggestion. If prednisone is making you feel better but the side efects are troubling (I don’t use prednisone unless I’m dying – I want that magic bullet in my breathing war chest as long as possible) would Theo Dur bring you the same mobility improvement without the side effects? And, does your doc have you on D3 for improved energy?

    I’m not a doc, and this is not medical advice. But, having some similar wellness issues and finding that I do better with these two choices, I figured I’d throw it out there for your consideration.

    I’m in year 3 of my likely 3-5 year quality of life span. Still don’t have an expiration date on my foot, but I also know my quality of life is finite.

    Have that conversation with your doc, and I hope youget some helpful feedback. Hugs to you.

    Like

  4. Damn, even spare body parts come with a limited warranty? I think that would bother me more than it seems to bother you… I wouldn’t want to feel like I have a time bomb counting down in me. I absolutely would not take a terminal illness very well. I would be too upset over the eventual certainty to fully appreciate what I had left…

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    • Well, maybe years ago I might have felt that way, but I’ve been through a lot and could easily be dead by now. My first husband is dead. My brother died. ALL my aunts, uncles, mother, father — all dead, many of them younger than me. In fact, MOST of them younger than me.

      We are all going to die. Tomorrow or in 20 years or next month. I just — as of now — know when. And it’s also possible that they will figure out a way of changing those valves without full surgery. I know they are working on it. Whether it’ll be in time for me? No idea. They might. But in the upcoming 10 years, I could also be hit by a runaway beer truck. Or fall off the balcony head first (I almost did that the other day without any help).

      Regardless, ultimately we all pass. Death from all causes? 100% for everyone. Even Republicans.

      Like

  5. I know of hundreds and dozens of personal friends using CBD and it works. Worth a try I’d say. From personal knowledge (although I was nervous at first) I’ve found I can actually sleep when I eat a jelly just before retiring. It’s made a huge difference. I sleep and wake up feeling much more refreshed and able to manage the pain through the day much better.

    Liked by 1 person

  6. Marilyn, I admire your sensible, no self-pity tone in this piece. Not sure that I could manage that. I share your mixed reviews on prednisone, which I take periodically for fibromyalgia. Ramps me up and makes me feel like superwoman, but it gives me terrible insomnia and heart issues. What a dilemma!
    Have you tried cannabis? I have had good relief for pain and sleep issues (my pain is nowhere near the same level as yours). I use a topical as well as butter for sleep.
    Other than that, I’m trying to focus on the many joys in my life (the grandkids, good food, new music, big belly laughs.) My Dad used to say, “No one gets out of this life alive.”
    I’m finding myself increasingly curious about what’s next.
    Good luck to you and to those batteries…..!!!

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  7. With all the recent deaths in our family we are all become aware of our finiteness. Also we are all reviewing our wills.
    Leslie

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  8. Unbelievable what we have to go through here. A REALLY tough journey.
    I’ve heard it said that we are never thrown anything that we aren’t up to. So, you are one hell of a tough Soul. That doesn’t make it easier unfortunately.
    We’re all rooting for you out here, but reticent but fear to carry part of that.
    I guess we’re all on borrowed time and don’t know when the bell tolls. As you say, we can as well as possible and try to spread a little joy.
    May I say that you are succeeding? !!!
    Bless you. And have a great Season.

    Like

    • The only difference between my borrowed time and everyone else’s is I actually have a clock ticking. Which is interesting, in a weird way. Good I have a sense of humor, isn’t it?

      Like

      • I can have no concept of what that must be like.

        Like

        • I have to look at it as I have a specific timeline, but we are all going to die. Sooner or later, one way or another. Hell, I might not live long enough to need the valves replaced. My brother died in his early 60s and by my age, my mother was also gone. A lot of people much younger than me are already gone, so at least I’ve had a reasonably long life.

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          • A very close friend of mine died from a stroke just recently. He was 63. Shocked us all terribly. He had been a close friend for over 40 years. He was like a brother. I’m not sure I’m over that yet. I know he’s OK, but I will dearly miss him down here.

            Like

  9. Omg your pain is horrible. I can somewhat relate. My fear with prednisone is my spine. But it is a wonder drug for sure.
    Here’s to a miracle!!

    Like

  10. I think it makes sense to make a plan. Technology will undoubtedly progress in ten years but you need to have some quality of life in the meantime. Living to an advanced age bedridden and unable to do anything you enjoy doesn’t sound desirable. A compromise solution is what you need to keep you going.

    Like

  11. I’m sorry that you are going through all of this Marilyn. My colleagues in the biomedical engineering department at the university are working on various inventions for a variety of ailments and creating interesting research projects exploring a host of issues.

    It takes a lot of guts to admit your pain. Many don’t want to share it, but that could be harmful. Although you don’t want to spend the rest of your life fending pain. taking steps to help alleviate your pain is vital. I think there are other things you can consider besides medication. Ask for help when you need it, meditate, self-soothe, be aware of your thoughts and behavior, make the things in your environment more ergonomic to improve comfort.

    I read this article a few days ago, “7 Life Lessons from a Guy Who Can’t Move Anything but His Face” Here is is blog post: https://unstoppable.me/life-lessons/?fbclid=IwAR1RyIUk62dSCHA16GKUfxl_Y_nkQhAC-2rxP1WwqyUZledTUwkN8fclbXs

    Like

  12. I gave it a like. I appreciate that you shared this along with your logic and humor. As you say, it’s about making the most of every day. L’chaim!

    Like

  13. Can’t “like”. I admire your logical approach to the problems, and hope there’s some smart, well-funded research team somewhere that can extend battery life without ripping you open. Honestly, you’d think “they” would have thought that one through better 🤨

    Like

  14. I will have to miss a comment on this. We are the same age, although my spare parts are just bone construction, these rest were removals. I now have a semi Invalide at home and just take the days as they come

    Like

    • In the end, that’s what we are all doing. But those of us with specific time limits at least have the option of organizing our time in some sensible way. i think you’re doing very well, actually. I am trying to figure out how to do better, too.

      Liked by 2 people

  15. Miracles happen all the time💚 I’m sending positive vibes, tons of prayers, and biggest gentlest hugs. I am heartbroken you ache so much.

    Like

  16. I think it’s less a matter of how much time any of us have left than it is about how good that time is. My dad faced what you’re facing (in terms of years) when he was 30. And he knew his last years would be very fucked up.

    From what I’ve seen life past 80 can get pretty hard for even healthy people. For me — as I learned last year — if I can’t do the things that are me, I don’t want to live. I’ll fight to maintain myself but I know there will be a time when no fight will matter. We all have to make some kind of peace with this stuff. 💕

    Liked by 2 people

    • And that’s why I’m trying to make some kind of sensible plans that will let me live the time I’ve got better. I’m not going to be 30 again or even 50, but maybe I can find a way to get a little more motion into my life. If I can hurt less and enjoy what I’m doing more, that will be a huge win. Frankly, I’m surprised I’m still here at all. And yes, we ALL need to make peace with it. Just some of us have a deadline and the rest of us? We could get hit by a runaway beer truck tomorrow.

      Liked by 2 people

  17. I’m sorry to hear about the pain. The replacement of a pacemaker seems to be much less difficult than the original device.
    My friend is on his 4th or 5th pacemaker (at age 88). The last change happened on an urgent basis this year, and the surgery was quick and easy — basically unhooking the old, and hooking up the new — not heart surgery per se, but a small incision and reaching in only as far as the device itself..

    Like

  18. Clicking “like” button seems wrong somehow but I think it’s practical to consider options as we face our guaranteed finiteness. I just wanted to say I’m sorry you hurt and the pain can’t be relieved. Ouch! Glad you’ve had a short respite.

    Liked by 1 person

  19. Steroids are good for pain management. I used to get them for my knee pain before surgery. But as you said an extended use can be problematic. Hope is a strong motivator. Hope for the best. No one knows how long they have.

    Liked by 2 people

    • But you see, I DO know. Unless someone makes a great leap forward, medically speaking — and they really ARE trying — when my time is up, that’s it. Unless I fall off the deck head first while trying to change the bird feeder. That would end it sooner.

      Liked by 2 people

      • Then I hope that your calculations are wrong.

        Liked by 1 person

        • Sadly, they aren’t my calculations. That’s how they work. You make choices. I could have gotten mechanical valves. They last longer. But then you have to take blood thinners and that has other consequences. My hope is they find a way of replacing (or repairing?) implanted valves without open heart surgery. I know they are working on it, but whether they get it functional in time for me remains to be seen. Meanwhile, I need to make sensible plans. Hopes and prayers aren’t going to make the difference, but advancing medical technology might. I’m banking hard on technology.

          Liked by 1 person

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