the day that I have been waiting for

The day that I have been waiting for has arrived.

I am trying to find an appropriate way to describe the type and tenor of the emotions that are swirling through my head right now as I sit on my couch, afternoon sun and heat streaming through my window, trying to digest my appointment this morning and the scan results that are sitting next to me in four neat pages.

All summer I was looking forward to today, the day that everything would be revealed, all questions answered, all decisions decided. Every time my friends asked me what was going on with my health, I would say, “Well i’m not tolerating the new treatment very well, but it could be working anyway. I will know after the next scan.” It has been the longest three months ever. Now, with my last quarter of school starting in just two days, I was eager to put my summer of waiting behind me and move on finally to a fall of knowing what the hell is going on.

It seems to be a running theme that every time I think something is going to be revealed, answered, or decided, more unknowns, questions, and decisions come up and I am left feeling more confused and lost than before.

So I feel confused and lost. Sad and angry. Frustrated. Annoyed. Eager to take action but unsure if this is the right time to finally take action and make demands. Silly for putting so much stock in today and this scan and these answers. I should know better than to believe anything in medicine and in cancer treatment is so simple.

The obtuseness of this post is probably making my readers as confused, lost, sad, angry, frustrated, annoyed, eager, and silly as I am.

Clearly, my scan last week was not the reveal-all I thought it would be. It did not show tumor shrinkage. It did not show ballooning tumor growth. It did not show tumors that were the same size. My tumors are slightly larger, but they didn’t grow enough for the doctor to change my treatment plan. He wants me to stay on my current treatment for three months (assuming I can tolerate it for that long) and get another scan. Then I can look forward to that day as the day when everything will be be revealed, answered, and decided. Presumably I will also have my master’s degree by then. So maybe i’ll be smarter.

I am not satisfied with that plan. It sounds ridiculous to me. My tumors grew. Quick: DO SOMETHING.

As always, there is a question I forgot to ask: Has my doctor suggested we do nothing because I am on a clinical trial and the terms of the clinical trial dictate what we should do and not do? My tumors didn’t grow enough to reach the “tumor growth” threshold on the study, so I am lumped into the “stable disease” category and told to wait. If they had grown 1 mm more (what if they measured wrong?) I would have reached the “tumor growth” threshold and he would have booted me off the trial and we would have discussed what we’re doing next. Which would not have been to sit around and wait for the next scan. I forgot to ask if his advice would have been the same if I was not on a clinical trial.

That’s what second opinions are for, I guess. I already have an appointment scheduled and an email sent and scans on their way to the oncologist I was seeing since I was first diagnosed. Maybe that day will be the day when everything will be revealed, answered, and decided. Or maybe nothing will ever be.

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7 Responses to the day that I have been waiting for

  1. Betsy says:

    Ugh, I’m sorry Lindsey. I’m sorry that today wasn’t as definitive of a day as you hoped it would be. I hope tomorrow is a better day.

  2. Suraja Raj says:

    I don’t know if it helps at all to know this, but regardless of what the clinical trial requires, ethical review considerations require healthcare professionals to pull you out of a trial if they believe that the treatment is causing you harm, and/or if there is a clearly better treatment. So while you probably still have many unanswered questions, I hope that bit sets you (relatively) at ease. Stay strong.

  3. Matt says:

    You’re in my prayers and thoughts, that’s the least I can do. All thes best Lindsey.

  4. Lindsey, tonight and tomorrow, I will be praying very hard for you at Yom Kippur services. I hope all my prayers will come true and you will soon be enjoying good health and happiness.
    All my Love to you.

  5. Matt says:

    First of all I hear your frustration!

    This crap is very serious & you don’t seem to be getting any answers that give you hope.

    Clinical trials are an option & they have made some remarkable breakthroughs in medicine.
    But they are not the only option…at some point you may have to make some hard choices regarding the trial you are in.

    Second…I don’t believe I’ve ever read the word “obtuseness” used in a blog.

    Still trying to wrap my mind around that one.

    Third…I am reminded of Kris Carr and her remarkable reaction to being diagnosed with
    what is labeled an incurable cancer.

    She decided to change everything.

    She came to believe that the way she was living her life wasn’t working & she changed

    Nothing obtuse about that!

    She just decided to embrace life instead of sticking to her same old routines!

    Something to think about…

  6. Beth says:

    I’m so sorry you didn’t get definitive answers ….i can’t imagine how frustrating that is….my opinion is taken from Scripture…’s that only God knows the number of our days…..He has a plan for you, right now, right where you are….He loves you with an everlasting love even though your circumstances may try to scream the opposite to you…..I am praying for you..I’m so hoping that you will seek Him and find joy and peace even in the midst of turmoil…..Beth.

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