suddenly i’m on chemo again

Yesterday I embarked on a new phase in my treatment.

After all the anguish I experienced making this decision, after all the time and energy I spent going back and forth between my oncologist and my second opinion, it seemed anticlimactic to just fall into the option that made the most sense in the moment and allowed me to begin treatment the quickest. I’ve been off chemo for over a month now, though–I was getting desperate.

So, last night before I went to bed, I opened one of the blister packages with my new drug in it, took the drug, and went to sleep. And suddenly today i’m on chemo again.

I enter this new phase a little wiser than when I started the last phase a year and two months ago. Most importantly, I know now from experience that this new type of chemo i’m on won’t work forever. In fact, it might not work at all. Or it might work for six months or nine months or a year or many years. Time will tell. As my oncologist says, “Doctors aren’t very good at telling the future.”

Unfortunately, the “wiseness” that comes with having done this before also brings with it a little cynicism. I have heard a lot about this new drug that i’m on before, and not all of it has been good. It supposedly has few side effects like the others, but in the trials it did not last as long nor shrink the tumors as much as the chemo I had to stop. It’s also very similar to the first drug I went on last year that didn’t work at all. But it’s something, at least, and if it doesn’t work then I will know relatively quickly and I can move on to something else. On the flip side, I suppose it could also exceed everyone’s expectations and melt the tumors away.

I’m getting it through a clinical trial, which sounds more exciting than it actually is. By signing up I had the potential to either get this one drug alone, or this drug paired with another drug to test whether the two together work better than the one alone. I just got the one drug. Because I had so much trouble deciding what to do, this outcome actually added less variables to the decision and made me feel more at ease in starting yesterday. But it also added somewhat more certainty to the outcome. There is clear data on the drug. It works in most people. It usually lasts for a year or less. It doesn’t shrink much. What if the new combo works better than the one drug i’m getting alone? What if it could have been a cure? I see some benefit in finding some treatment that i’m really excited about any trying that–at least I would have something to believe in. Being a liver is something, but I don’t feel like i’ve been very good at it lately. And it’s not a cure.

When they say pancreatic neuroendocrine cancer is like a chronic condition, I always knew that meant that I would probably have this forever. But I thought it also meant that my condition would remain in a relatively constant state forever. I didn’t account for these changes in treatment plan. Let’s hope the next change is easier–and more inspiring.

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7 Responses to suddenly i’m on chemo again

  1. Ronny says:

    Lindsey, I sent you an email originally but don’t know if you read it. I am sending another with information you need to read to help you try to get rid of cancer. It is the truth. PLEASE READ IT TO HELP YOU.

  2. Bill says:

    Not being very good at being a liver, and admitting to it, is probably a very good sign that you’re being a good liver :-). That probably doesn’t help a tremendous amount, but I’m definitely inspired that you keep writing when you can.

  3. Matt says:

    Every time I go to the doctor I always tell myself, “Let the healing continue” .

    Sometimes I say it outloud & people will look at me strangely…especially receptionists!

    But occasionally I will meet someone who understands what I am trying to accomplish.

    Recently a woman was about to draw my blood when I said, “Let the healing begin”. She stopped..looked at me..and said “EXACTLY”!

    I am imposing my will on something instead of feeling as though I have little or no control.

    I am imagining the best of all outcomes…because to worry obsessively about what I don’t know is to cause my body even more stress that it is already dealing with.

    So…everytime I take a pill…I imagine it being just what i need…for as long as i need…until something better comes along.

    Best advice my Pop every gave me was “To do what I have to do…when it ought to be done..whether I like it or not”.

    It is what it is.

    Something to think about.

    Move forward.

  4. Michael says:

    I am praying for you Lindsey. I wish you all the best.

  5. Marcelo says:

    You’re inspiring, Lindsey. I’ve learned so much reading your posts through a long time. I’ve learned to deal with my friend’s disease and understand her mind as much as I can, so I can be a better person to her.
    As she is in my everyday prayers, you are, Lindsey…honestly and truly.

    Try not to overthink the choices you made and the options you didn’t choose. Believe in yourself and keep going on.
    Matt said everything: take the pill, imagine it being just what you need, for as long as you need, until you decide a better option showed up.

    Sorry for my english.
    Best regards.

    Fortaleza, Brazil.

  6. Ashli says:

    Hey. Relevant info from the neuroendocrine webinar yesterday:

  7. Ashli says:

    Go about 17 minutes into it. I’m sure you already know all of this, but just in case.

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