Sunday, February 21, 2010

Which Would You Rather Have? Round Two- Progressive Disability versus Cancer

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"If you're going through hell, keep going." ~Winston Churchill

Last week I posed the question- which would you rather have, progressive disability or sudden disability? That post spurred a lot of interest, so here is round two.

First, some introductions:

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 8 years ago with the slightest limp. Now I spend all day in a wheelchair. I know some advanced MS patients who long for the days when they could sit in a wheelchair for hours on end.

Cancer is an even more nebulous affliction than last week’s sudden disability was. The term “cancer” covers the spectrum from types that rarely kill, such as skin cancer, to types that often kill, such as lung cancer.

What are some of the similarities?
  1. With both progressive disability and cancer there is a DAY, a singular moment in time, that is your day of diagnosis. For some patients, with either PPMS or cancer, there are hints or suspicions before diagnosis day. For other patients, it comes as a complete surprise (I was in the former group). Diagnosis renders your life a dichotomy- there is the life you lived before your diagnosis and the life you live after. It’s as if two different beings occupy your body, one at a time, handing off the baton on diagnosis day like track athletes in a relay race.
  2. In each case, progressive disability and cancer, soon after diagnosis you are faced with treatment choices, none of which are very appealing or guarantee a positive outcome. In the case of PPMS the choices are either to treat the symptoms only, to try some unproven treatment to slow down the progression, or to do nothing. In the case of cancer the options are usually surgery, chemotherapy, radiation therapy, a combination of all three, or nothing at all.
  3. With both progressive disability and cancer you disclose your new reality to family, friends, and often coworkers. Disclosure to those you hold most dear is a gut wrenching experience, where you do your best to put a positive spin on the situation to minimize the drama. They usually see right through you though.
What are some of the differences?
  1. PPMS rarely kills- directly and suddenly anyway. In most cases it has the effect of shortening your lifespan by a number of years, but, with some exceptions, it is not in the strictest sense a killing disease. Cancer, on the other hand, always carries with it the cloud of potential death. Depending on the type of cancer, the prognosis ranges anywhere from “most people have a complete recovery from this” to “you need to get your affairs in order.” In summary, with progressive disability death is rarely part of the initial discussion. With cancer, death is usually part of the initial discussion.
  2. Cancer is often cured. Cancer can be transient- visiting upon you for some part of your life, and if you survive, leaving you at some later point. People sometimes speak of their cancer in the past tense. PPMS is never cured. Once PPMS visits you, it doesn’t leave. People with PPMS are unable to refer to it in the past tense.
  3. Similarly, people with PPMS don’t have the emotional highs and lows associated with cancer. We know we have it. Acceptance comes early. We never deal with the disappointment of hoping that just maybe we beat it, only to learn months or years later that in fact we didn’t. Cancer patients ride more of an emotional roller coaster than progressive disability patients do, at least in this regard.
  4. Cancer is common. Everyone knows someone who has had cancer. Most of us have lost loved ones to cancer. Many among us harbor a palpable fear of developing cancer. On the other hand, many people don’t personally know anyone with a progressive disability like PPMS. I didn’t. It’s one of those conditions that few people waste any time dreading.
It is worth noting that unlike the sudden disability versus progressive disability discussion last week, cancer and PPMS are by no means mutually exclusive. One of the fears those of us with a relatively rare disorder like PPMS have is that, on top of our current struggles, we are as likely as anyone to contract some sort of cancer. Doesn’t that sound like a delightful combination?

So, which would you rather have- progressive disability or cancer? My response is a bit of a copout.  I would answer the question with another question.  What kind of cancer are we talking about?

I would choose cancer over PPMS if it was a type that has, oh, a 60% chance or better of survival. I would, however, choose PPMS over cancers with a 40% or higher mortality rate. But that’s just me. And, frankly, that’s just me today. Ask me tomorrow or next year, and I’m likely to give you a different number.

So, which would you rather have- progressive disability or cancer?

Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.
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  1. I'm not copping out here. This is my honest answer: I don't care which.

    I want to live as long as I can with some semblance of a quality life. I wish to die with grace, dignity and serenity.

  2. Weeble,

    Thanks for stopping by and commenting.

    Of course, in the end, you are right. It doesn't really matter what we die of. My hope is that I enjoy life to the fullest right up until the moment I suddenly pass away, maybe in my sleep, in my home, at a ripe old age. Very few of us get to leave this world on those terms though.

    But I still enjoy the thought exercise of comparing my plight to the plights of others. I'm only being tongue-in-cheeck when I ask what affliction you'd rather have. These posts are really about describing what I'm going through, and attempting to articulate about what others are going through as well.

    Already, today, I'm feeling slightly better about my situation. I would choose cancer over PPMS only if it was a type of cancer with a survival rate of 70% or higher, not 60% like yesterday.

  3. I also have PPMS. That is a fact. I may also someday be faced with the diagnosis of cancer. So unlike the majority of the population, I would have cancer and have to deal with that while dealing with the beast of PPMS, which as you know is a real bitch. So when well meaning people tell me (as they have) that I won't die from my PPMS, I tell them no I won't, but most likely will die of something else while dealing with limited mobility and life in a wheelchair. So I would vote for a life w/o PPMS and deal with the cancer. BTW I greatly enjoy your blog!

  4. Mitch, this reminds me of a piece I heard on the news asking women whether they would rather be shaped like an apple (extra fat around the middle) or a pear (extra fat around the hips). One woman they talked to replied "But I want to be shaped like a banana!"

    Seriously, sign me up for P/SPMS any day. I watched my mom and my sister-in-law go through the cancer torture. I haven't had to do anything like what they went through. My mom is still alive. My SIL isn't.

  5. Zoomdoggies,

    Thanks for commenting. My condolences on the loss of your sister-in-law. I lost both of my aunts on my father's side to breast cancer. My mother-in-law is a breast cancer survivor. The choice I present in this post is really no choice at all, is it? Cancer or PPMS...I'll choose banana's instead too.

  6. Yes, we have no bananas... e have no bananas today…

    I'll take the progressive disease. Cancer -- even the word -- scares the bejeebers out of me. I've seen many forms of it in my family, and no thank you, I'll pass on that. While living with this MonSter and all its hidden agendas leaves me exhausted, I'll still choose this.
    Thanks for providing these thought-provoking posts!

  7. Anonymous,

    I'm glad you like my blog, and thanks for yor thoughts.


    I hear ya. Early on in my disease course, in an effort to put people at ease about my condition, I would say "well, at least it's not cancer." I don't use the cancer comparison anymore, but I could say "at least it's not terminal cancer," but I don't bother. Thanks for your comment.

  8. Back when the Americans with Disability Act came out, I held training classes at my job. At that time I was with a group of people who had various types of disabilities and every single person would rather have had their disability than anyone elses. Very interesting, I thought.

  9. Riley, so in the battle of cliches between "the grass is always greener on the other side of the fence" and "Don't jump from the frying pan into the fire", the latter wins?

    Thanks for stopping by and commenting.

  10. I think I would rather have neither! As a person with PPMS, I can still type left handed and I have a job that is very forgiving for my condition. I have PPMS, would I change it or swap it for another illness? No. I am also a Type 1 Diabetic, prior to my MS Diagnosis I followed diabetes research constantly. I really didn't know how good I had it. I'm with you, on living each day to it's absolute maximum. We owe that to our wife and kids. I truly believe that I have this "monster" for a reason. If I ever figure out the reason I'll let you know. Until I do I need to live life to the fullest and "seize the day". My family deserves that.

    Thanks for the thought provoking post.


  11. I know this post is older, but funny you should ask.... My plan is to get stage 4 cancer of some kind when my SPMS becomes more than I can bear. However, (enter music intro) we don't always get what we want.

  12. anonymous,

    I'm surprised and delighted that people are still reading my old stuff!

    It's unfortunate that you fear that your MS may eventually become more than you can bear, but wouldn't it be easier if you could decide to have a doctor end your life for you then wish for stage IV cancer? This is going to be the subject of a future post…