third opinions

Getting this third opinion yesterday was a bit like being diagnosed all over again.

Except this time I knew what was coming, and I knew the lingo, and I don’t feel quite as sick as I did… but none of that made it any less difficult.

In my stack of medical records, this doctor chased down the sizes of my tumors and the dates of my surgery and biopsy, my chemo starts and stops, my scans, my pathology reports, and all of the other little numbers that are so important to my doctors but that don’t mean a thing to me. He re-stated the long string of familiar words that designate, specifically, what I have. He re-stated all that i’ve been through in the last year and a half. He was happy with some of what he saw and had suggestions for the rest. I have a lot of options. Other types of drugs. Clinical trials. Treatments and procedures that go by acronyms or end in “ation.” A transplant, if all else fails.

But in between all of my options is a lifetime of watching this and making sure it doesn’t start growing again. It doesn’t seem like enough, that this is all there is–this haphazard list of treatments that might work a little or a lot, for a little time or a long time. As promising and as hopeful as each of these drugs and clinical trials and acronym and “ation” procedures sound, not one of them is curative. The doctor left that part out. He made it sound easy, like you get four of these treatments. Period. Or you spend a year on this drug. Period. Or you get this procedure done twice. Period. Or you do all of the above. You can live for 5! Or 10! Or 20! years. But when I add up all these years of life that he threw around yesterday in my head, they never add up to that much.

I know I shouldn’t get hung up on any of these numbers. Or any of these words. Or any of this. If I continue to feel good, if my treatments don’t make me feel much worse, if the upkeep is minimally invasive, this becomes just like any other chronic medical condition that people deal with. I’ve been doing a pretty good job of dealing with this so far–what’s another 5 or 10 or 20 years? That’s the whole idea of my “i am a liver” mantra. But the problem is, it just doesn’t sound like any other chronic medical condition. It sounds like cancer. Cancer spreads indiscriminately. It kills people regularly. It inspired a book called The Emperor of All Maladies. Cancer is bad.

The doctor addressed this. He said, “We live in a society where when you say you’re diagnosed with cancer, everyone freaks out” and starts looking up on the internet how long you’re going to live. “We don’t know how long you’re going to live.”

He also said, “This is a little bit like being diagnosed with diabetes.” Diabetes doesn’t sound that bad. Lots of people get diagnosed with diabetes. Hell, I was diagnosed with diabetes after my surgery, and giving myself insulin shots and checking my blood sugar three or six times per day was a pain, but I didn’t worry that it would kill me. Maybe that’s just because I had other things to worry about–like cancer.

When I look forward, I want to be able to see the things I could always see before: the job, the husband, the house, the kids. When I look forward now, all I can see is how cancer could interfere with all of these things.

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11 Responses to third opinions

  1. Matt says:

    You don’t have an expiration date stamped on
    your forehead.

    That’s what the doctors are trying to say.

    You’ve set sail into uncharted territory to some degree.

    Who really knows what the future holds?

    You’re just more aware of this than most people.

    In some circles that’s actually considered to be a gift!

    A rather macabre gift to be sure.

    But it really does come down to perspective…doesn’t
    it?

    Life can be an adventure…just continue to move
    forward.

    Who really knows what lies ahead?

    You could just as easily get run over by an 18
    wheeler while you’re consumed with worry about your
    treatment options.

    At least you live in a time when there are options!!!

    Something to think about…

  2. Mark says:

    Well said!

  3. Ian, UK says:

    @ Mark March 24, 2012

    ‘At least you live in a time when there are options!!!

    Something to think about…’

    So very true. An answer is out there and work is going on all the time to find it. And they’re not shooting in the dark. Researchers at Johns Hopkins Kimmel Cancer Center have already deciphered the genetic code for pancreatic neuroendocrine cancer. So, look after yourself and keep your spirits up. Help is definitely on its way.

  4. Matt says:

    Sometimes when we look ahead all we see
    Is a wall in front of us.

    Adversity…sickness…fear.

    The challenge we face is to have the faith
    To imagine that there is a future waiting
    Patiently for us.

    Doesn’t mean that you won’t have days
    Filled with doubt.

    You’re a brave young woman, but you’re
    Not bullet proof!

    You will have moments when you just want to
    Pull the covers over your head & forget about
    Cancer for awhile.

    Just keep taking a step forward.

    And don’t forget to breathe!

  5. slockwoodg says:

    I can explain why, but I feel everything will work out the way it’s supposed to.

  6. Marvin says:

    I don’t know if you remember me or not; but I’ve been following your blog for quite some time already. Being a cancer survivor myself (twice; @ the ages of 12 and 17) might give you the little push you might need to look @ the brighter picture: this can be beat. Luckily you and I, among others, now live in a modern society where we have options and routes we can take for road blocks such as the ones we’ve encountered so far. I’ve beaten this twice already in my short lifetime…I’m pretty sure your a strong woman who can do the same. Smile and look @ the brighter side :)

  7. Ashli says:

    Tomorrow belongs to no one, cancer or no. Just this week a 26 year old, healthy, totally cancer-free friend was killed in a car wreck.
    Grey hair, grandchildren, retirement…& even marriage, children, homeownership…& even images of tomorrow are all mirages. None are promised, not one. I should know–I used to work in the funeral industry. And I’m a pNET patient like you. It took some time, but I finally put the pictures away. This life is NOW. :-)

  8. aaronls says:

    It only just occurred to me that “liver” in your blog title wasn’t referring to the organ. I had always thought you meant “I am just [an organ]” in some cynical way lol. I’m sorry that they can’t give you a more hopeful outlook :( I tried to go back to college to get a graduate degree so I could try and get into cancer research. I felt helpless when my mom had cancer and it seemed like the world was crashing down around me and everyone else was happily going about their lives. I know it must be frustrating for others to be in control of your life.
    I wish I could have gotten into cancer research and contribute something to help, but I am too depressed to finish the grad program though. Its all I can do to convince myself to get out of bed and go to work. I feel ashamed.

    What kind of transplant do you need? How much would the transplant improve your outlook?

  9. GC says:

    First, I really enjoy your writing and appreciate you sharing so much with the world- I like to think I might be a little bit more empathetic with my patients and maybe know what to say (or not to say) at times because you have shared so generously.

    Second, I am sure you are awash with thoughts and opinions and I apologize for butting in. I have been wanting to mention for a long time that if none of your docs have thought about an underlying genetic cause (a condition called MEN1) for your diagnosis, it would be worth considering if it’s not too overwhelming right now. I don’t know enough about your history to know whether it fits, and maybe someone has already had the thought, but I felt somehow remiss if I never brought it up. Be well and take care.

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