The Invisible Snake

Empty TankI was listening to an audio book, a detective novel by Jeffery Deaver called XO, part of the Kathryn Dance series. The story is about a young country singer who is being stalked. This stalker is very clever, very intelligent, very skilled at not being where he might be expected to be and showing up in unexpected places at unexpected times. The singer, not surprisingly, is terrified.

A local police detective tells a story. (I’m paraphrasing because I don’t have a print copy of the text.) One summer, he recalls, he saw a huge rattle snake in his back yard. The biggest rattler you’ve ever seen. He went into the house to get his handgun to kill it, but by the time he got back outside it was nowhere to be seen. Was it under the steps? Behind the barbecue? In the shrubbery? Underneath the house? Inside a pool toy? He couldn’t find it anywhere. “The invisible snake,” he called it, making it a joke for the sake of his frightened children.

But that invisible snake, he said, ruined the back yard for him and his family that season. They couldn’t go outside and enjoy it because no one knew where the snake was, and one of them might end up getting bit, maybe even one of the small children. That snake was more frightening invisible than it was in plain sight.

I thought of this during a Facebook conversation with Jody Schoger about a blog post by Uppity Cancer Patient called “If, Not When“. Uppity Cancer Patient (UCP) and I have different points of view about this, and Jody and I differ, too. I don’t know UCP personally, I’ll leave her out of this for now (but if you’re reading, please jump in and join us in the comments).

UCP writes about the “land of if” (treatments stop working) and the “land of when”. You really should read the entire post (at the link above), but here is a taste:

I don’t want live in the Land of When.  That’s like living in Purgatory, and I hear from the Catholics that that’s not a pleasant place.  I want to live in the Land of If instead. A land where the question is, if the cancer progresses?  If I am disabled? If.

That’s the land that most people live in. Most people don’t go through the day thinking, I will be disabled, I will be in pain, I will suffer.   What can it hurt for me to live in the Land of If too? I might be disappointed if the cancer progresses? 

I’d rather experience disappointment if the cancer progresses, than to experience  that disappointment every day of my life.  Even if I only live 30 more days, living in the Land of If sounds much more pleasant than living in fear.

I don’t know anything about UCP’s current health status, other than that she is living with metastatic cancer. I don’t know how long ago that started or where her mets is or any of the rest of it. I know that Jody has written in her blog that after fifteen years of being NED (having no evidence of disease):

The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer.

Jody has said online that although she has lost a lot of weight, she doesn’t feel particularly unwell at this point.

My metastasis was found by the end of my first year living with breast cancer; it is in the bone. I’ve had these bone tumors for over eight years now. They hurt. They interfere with my daily life and I’ve had to start taking narcotics for the pain. Over the last year, the mets has progressed more than it has in the several years prior and I’ve been having increased pain.

I am most definitely living in the “land of when”. I have kind of a theory that people who are newly diagnosed and those who are NED populate the “land of if”. I know I can’t live there any more. For me, it would be flying in the face of reality. For me, it is not a question of if treatment stops working but when it will.

This is one of those issues with no right or wrong answer, and I am very interested in what other people living with cancer and their family, friends and caregivers think about living in the “land of when” and the “land of if”.

How do you feel about the invisible snake?

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37 Responses

  1. I think, properly equipped, the invisible snake can be dealt with. I live on 33 acres, in an area where snakes thrive, for whatever reason. During warm weather, a shovel or hoe stands within reach of my front door. If I am walking out in the yard, it is in my hand. So that when the invisible snake becomes visible again, I can deal with it. As far as the “Land of If”, I think that is where the invisible snake thrives. It feeds on the denial of what your logical mind knows is there. It also sits back, still invisible, allowing you to deceive yourself that you are living, when in fact you are living in supposition, instead of in fact. The “Land of When” is the land where the invisible snake cannot remain invisible. He is very visible, very vulnerable, and you can dispatch him easily with truth and fact. Supposition cannot thrive in the “Land of When”.

    Another way to put it – for me anyway – is the “Land of When” is like playing solitaire with a brand new deck of cards; the “Land of If” is playing solitaire with a deck of cards missing the Ace of Spades. You can never win.

    Thanks for a great blog! 🙂

    • How could I say it better than margiehudson81 just did? I, too, choose to be in the Land of When, so as not to be taken by surprise and shocked when something spreads, or a treatment stops working. I’ll be PISSED when my treatment stops working, but I labor under no delusion that it will work forever. And I know progression from my bones, where it is not yet killing me, but breaking me into pieces bit by painful bit, is only a matter of when. My Oncologist would prefer me to live in the Land of If, and I find that disconcerting from the person I expect to be up front with me, holding a shovel or a hoe, prepared for that varminty snake to show its dirty head.

      I guess when I was “newly diagnosed” it was “IF”, but when a CT scan first revealed bone mets while looking for kidney stones, I was oddly calm, eerily accepting. I got very emotional and did not receive the news well when it was confirmed by bone biopsy. I knew it was there. I don’t know why the confirmation threw me.

      Now, 4 yrs into MBC, with lesions on virtually every vertebrae (except the 4 that have had radiation), both femurs, a scapula, clavicle and skull, I am definitely prefer to be prepared with a “WHEN”. I cannot abide reading things from folks who are sure that a cure will come any day, within their lifetime, They are not prepared for a snake to show up under their patio chair. When Femara could no longer be tolerated, I moved to Aromisin. When that didn’t work, I moved on to the next AI and the next, until it was clearly time to move on to bigger guns, CHEMO. Thank goodness for Xeloda, chemo in the convenience of a pill in the comfort of your own home. I know it won’t work forever. I hope it works for a good long time, but when it fails I will move on to something less pleasant and less convenient. I’ve always said “When that treatment fails”; I have never said, “If”.

      Excellent post, great topic.

    • Knot Telling says:

      Thanks for great comment, Margie. I’m a “Land of When” person, but I do respect those who choose the “Land of If”. I think everyone has to deal with the invisible snake in their own way.

  2. KT, thank you for this wonderful post. I hate to think of you in the “land of when”. I know this is a transition you have been making over the months I have known you. We are all in the “land of when” but there is a line all of us must cross in heading this reality straight on instead of letting it rest in the periphery. Making the crossing too early is not healthy and neither is making the crossing too late.

    You are a beautiful and strong woman, who lives a life of meaning and grace. I am so glad to have you in my life. I will stand with you in the “land of when” for as long as you want me here. Xoxoxo

  3. lissyross says:

    I am NED for about a year now, but I accepted that I live in the “land of when” a long time ago, regardless of my current status. I know eventually that snake will come out of hiding, that he is really there somewhere. But I don’t dwell on that. I can’t live in the “land of if”, I need to know that the snake is here, it reminds me of the tenuous nature of my life, and keeps me on the path of living every moment I have to its fullest, never thinking, “I’ll have time for that in a few years, a few months, a few days”. I just don’t know whether that is true, so I want to do my living right now. I don’t think this is a bad way to live, and, cancer or not, we should all be thinking this way, I believe it leads to a happier life.

    My snake is hidden at the moment, and I am in my backyard playing for as long as I can. But, unlike the police detective and his ruined summer, I know that whether or not I see the snake coming, he will eventually come, and there is nothing I can do to stop that.

  4. This post, and that of Uppity Cancer Patient, are very thought provoking. I’m not sure where I live. After a year on chemo and a little break, I was switched to Tamoxifen (ugh) and continue with Herceptin. The mets in my liver have disappeared or stabilized. The ones in my bones will be with me forever, along with the pain from the fractures they have caused.

    I would have to say I have one foot in the Land of When and another in the Land of If. I have always been a fan of denial. I have seen a couple of comments about choosing to live in the Land of Today. I try my best to live there…unless it`s a bad day.

    Thanks again for getting us thinking.

    — Kate

  5. NotDownOrOut says:

    I read your post and decided to go to the grocery store. Then I came home and read your post and decided to catch up on other matters. Now I am back to read it a third time and to say that I never considered what camp I live in before now. I am NED right now but have no illusions about the risks cancer will return. In fact, I keep noting more of the other side-effects of treatment that once seemed remote and have now taken up residence with me in this body.

    At the same time, I am living as much as possible today. I am not all that good at keeping fear at bay, but I prefer to educate myself and let myself feel what I am experiencing as it happens. I have no idea what camp that is. All I know is that I got through the worst thing I have ever experienced in my life a minute at a time. Sometimes a breath at a time. And I was afraid that I might not be as strong as I hoped I would be. When I thought ahead I was not feeling prepared for what might happen next.

    So maybe I have feet in both camps–like Kate. But I have a hoe, too, like Margie. And I plan to use the business end of it if or when necessary. I am going back to think more on this question. And, like The Terminator, I’ll be back. Thanks for the thought provoking post!

  6. t says:

    This is a poignant and thought provoking post Knot. Before cancer I used to live in the land of ‘what if?’ What if I followed in the long line of women who developed cancer in my family? What if I was abandoned by the people most dear to me? What if I couldn’t pay my way? All the what ifs caused me a good deal of worry and all of them have now materialised in one shape or form. Now I stay away from the Land of If and the Land of When. In my heart I know its most likely when but if I live there I am back to useless worry and preoccupation neither of which will change anything for the better. So today I use ‘how?’ How can I get as much enjoyment as possible from the things I still have? How do I manage my physical body to alleviate the after effects of treatment? How do I show the people who stuck by me that I am grateful for every moment? How do I live life as fully as possible from the minute I wake up? I will keep challenging myself with how and hopefully stay more mindful of the here and now. I think we all have an invisible snake, its just that some of us discover it quicker than others and some of us get bitten first.

  7. Primo Melon says:

    Humanity lives in the land of when, as do all living creatures. Humans have been given the gift of denial. If exists only as a fable in the intelligent mind. As the owner f failing kidneys, an irreversible state of being, I have laboured over this issue. My conclusion is I live in inevitable when. My beliefs make this a desirable, if somewhat fearsome, outcome. My Lord awaits me in the land of when. Hopefully you will meet me there.

  8. Cristine says:

    So this is interesting. Because I think “if” and “when” are two different questions. Once you are diagnosed with mets, when is always there. It may be a different timeframe for different people, but everyone has a “when”. The “ifs”, on the the other hand, are a different set of things. “If it progresses…” but how it progresses is almost more important. “If I am disabled…” could mean many things to different people. I know I have a “when” but I also know that, because of my beliefs, I am not privy to the when. Neither is my doctor – they can only use the tools they have. Some of them are very good tools and some will work better than others. My “when” might change as the face of cancer treatment changes also. These might also change my “ifs”. So for me they are separate but related issues.

  9. Elizabeth J. says:

    This was so beautifully expressed. I’m not sure if I am in the land of “if” or “when.” I seem to go back and forth. I guess I am still new to this. My primary cancer was 2012 and the spine mets this spring. Recently, a PET scan said radiation and hormone treatments had worked and I am NED for now. My oncologist has told me to think of this as chronic rather than terminal, kind of like diabetes as long as I stay on my meds, but he and I both know it’s not really the same. I am still trying to make peace within myself that this cancer, this invisible snake, is unpredictable and will be a part of my life for as long as I live, either through continuing treatments and watching to keep it in hiding, or someday actively fighting it again. It may stay invisible for a very long time, hopefully for life, or it may reappear at any point. And it may easily go back into hiding again or it may be very resistant. Not sure if that has me in the land of “if” or “when.” As I said, I am still new to this world of cancer.
    Elizabeth J.

  10. zippyrose says:

    I don’t have breast cancer. I have a stubborn form of skin cancer….melanoma that, despite surgery and treatments, continues to come back time after time. I also have autoimmune issues. I know this could drag on and on and on. But there is also the very real chance, that as more cancerous moles appear with more frequency, my immune system could at any given moment start shutting down on me. There is also a very real chance that it could start shutting down regardless, thus feeding the spread of cancer. This runs in my family, and I have had genetic testing that proves I am at a very high risk for other types of cancer as well, breast cancer included.

    I know I’ll be dealing with cancer for the rest of my life. However, I’ve opted not to do any additional treatments for now. I don’t see that they’re doing anything to prevent new occurrences. Will I change my mind? I don’t know. It just depends on how things go, I guess. But I’ve decided to live my life as best as I can for as long as I can. I have good days and bad days, as both diseases have caused a laundry list of other physical issues for me to deal with – predominantly bone & joint pain. But I can tell you unequivocally that I have no desire whatsoever to do any sort of life-extending treatment if it steals too much quality of life. I’m tired of laying around in a bed, staring at the same four walls, drowning in depression. That’s just not for me. The depression comes regardless, but I just want to feel as normal as I can for now. If, for some reason, someone can convince me that chemo will, in fact, help me one day – well, then maybe I’ll try. For now, it’s find, cut and move on…I know there’s a rattlesnake lurking out there somewhere. It hasn’t made it to my backyard yet, but it is definitely in my neighborhood. So I will keep a cautious eye open and do my level best to carry on until the day it shows it’s ugly head.

    • Knot Telling says:

      I really understand, I think, zippyrose. I don’t think the invisible snake has to do only with breast cancer. I think all of us who live with cancer have to deal with it one way or another.

      I’m dealing with depression, too. Like with the cancer, I do my best to treat it and then to live as best I can.

      Thank you so much for reading and commenting.

  11. Excellent topic. As an NED person who lives in the land of If, I can comment about this conceptually, but wouldn’t dare delude myself to think I could put myself in the shoes of someone as yourself, KT, with mets. I understand where UPC was coming from, but I’ve found that people everywhere live one way or the other. You have the Glass Half Fulls who practice that because no matter what, they need to cling to hope. You have the “realists” who look at the Glass Half Empty and don’t dare to hope to guard against crushing disappointment. So I’d imagine these mindsets, which are part of one’s temperament, follow everyone into the Land of Cancer. I’m one who clings to hope, not because I’m such a positive beast but it keeps me afloat as opposed to drowning. However, I would imagine if I had mets, realist that I am, I would absolutely accept that because everyone will die, and I’d want to understand that, yes, it is my time. Knowing that, I could prepare whether that involved loved ones, something left undone, the whole gamut. I’m not afraid of death because I have a strong faith in the afterlife. So for me, I imagine this is how I’d be, even if I’d feel sad at leaving my children. At least I could tie up loose ends before I changed residence. But again, this is how I think I’d be. Not being in those shoes at this time, I feel it would be arrogant to say what is best, what is not.

    My FB friend, Mickey Hirsch, who I’ve posted about, will be lucky if he makes it through the end of the year. I think he has the most realistic, yet positive outlook. And he needs to be a realistic because his 17-yr-old daughter will be orphaned soon. He has taken care of arrangements for her guardianship when he’s gone as well as financial concerns. He’s been a great example to me in dealing with it straight on, knowing it’s a sure thing, preparing for it, yet shining with so much love and light. I hope when my time comes that I’m the same way.

    • Knot Telling says:

      Thank you for sharing these deep thoughts. I do think that my mindset followed me into the Land of Cancer, but the disease has changed me and my ways of thinking, too.

  12. Maxine D says:

    Although I have no experience with Cancer, as someone with a spouse who is chronically (and terminally) ill, my observations are that there is no real clear cut cross over – rather a vacillation between the camps depending on the current health status, regardless of the prognosis.
    Thanks again for a thought provoking post TK.

  13. pjules1963 says:

    I respect all chronically ill patients and how they choose to live with their disease but I feel a little alone in my own approach. I prefer living in the land of when, which has allowed me to say my good-byes and prepare my family and friends for what it to come. It also ensures that I truly enjoy each and every day I have left, because it could be my last. When my cancer was refractory to the chemo I declined all further treatment despite my Oncologist encouraging me to continue with more chemo, stem cell transplants and then finally maintenance chemo for the rest of my life. The odds were not in my favour (from my research) that the stem cell transplants would be successful, and I would most likely die from this disease at some point and could not imagine going through it all again. I could not see the joy of living with years of very toxic treatments with debilitating side effects, isolated (during stem cell transplants) from almost everyone, just for it to fail like so many before. I also believe that the degree of pain one is in definitely changes how we view living, and pain makes it much harder to live in the land of If when there is a constant debilitating reminder. I am sure the sheer magnitude of my pain had a huge impact on how much longer I wanted to live. I am now just approaching the end of my life expectancy of 3-6 months and I actually feel very good with lots of energy for the first time in a few years. I am very pleased that I get to enjoy what is left of my life without all of the appointments and the treatments. My days are now spent with my family feeling good instead of sick on a couch so that I can truly enjoy them. Now that my pain is managed a little better I have a feeling I may be a around for a little (or a lot) while longer, and I am happy to live my life in the land of when, feeling confident that I have made the right decisions, never second guessing myself. I am glad I no longer have to worry about the ifs, and I worry very little about the when.

    • Knot Telling says:

      I live quietly in the Land of When, too, pjules. I’m not afraid of what will happen, but sometimes I am sad that it will probably be much sooner than it might have been.

  14. I’m also in the land of when after my diagnosis last month. The chance of my prostate cancer staying where is are somewhere between slim and none and slim is out of town. I’ll live with what I have for the time being but I won’t be surprised “when” it gets more aggressive.

  15. Liv says:

    What a brilliant post! I’ve missed your updates, KT, and worried that you’ve been so unwell you’ve not been able to write. I am glad you’re back!

    • Knot Telling says:

      Thank you, Liv! I was going through a strange time, physically and emotionally, and needed to step back and give myself some space for a little while. I’m glad to be back, too, and to see you here!

  16. YAPCaB says:

    I am definitely in the land of when. The drug I’m on now, lupron, is well known to fail in two years on average. When that happens, I’ll be moved to a new drug.

    Like you, I feel to be anywhere else than the land of when flys in the face of reality. To deal with the anxiety and depression of this I have meds and my largely successful efforts to live in the present.

    • Knot Telling says:

      You and I have a lot in common. Well, not prostate cancer; that’s sort of not possible in my case. 😉

      Did you see the note from Nelson a couple of commons up? He’s a blogger who is newly diagnosed with prostate cancer.

      Hugs, my friend.

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