I am worried that my eight months of good scans, minor side effects, and a happy oncologist will soon be over. I am going to worry about this for as long as it takes me to write this blog post and then i’m going to stop worrying. It doesn’t really help to worry or try to predict the future in my head.

My chemo has been wonderfully effective for eight months now. It has been so effective that I have been able to return to a semi-normal life (plus a brief period of internet celebrity) and sometimes, I almost forget that i’m sick. But even the best chemo can’t be effective when you’re not on it. And i’m not on it. Today begins week four of not being on it. As part of my normal chemo cycle, i’m given two weeks on, and two weeks off. This month I’ve had my normal two weeks, plus one–now two–more.

Why? Well, first, it was my liver. Now, my bone marrow. My body obviously doesn’t agree that my chemo is as “easy” as it feels, and my bilirubin, granul0cytes, platelets, and white blood cells haven’t gotten the memo that I FEEL FINE.

These blood test indicators of chemo toxicity are particularly frustrating to me for exactly this reason–they are completely invisible. My cancer is invisible too…but in the past, I have been able to sort of tell it’s there or if it’s been growing again based on my symptoms. These blood tests are just numbers on a page that mean nothing to me. There are no symptoms. My bilirubin was double what it should be last week and by far the highest it’s ever been–I was not yellow. (OK–but I will not be drinking anytime soon). Now, my platelets are low. Maybe I don’t clot as easily? And my granulocytes/white blood cells. Maybe I am more prone to catching a cold?

Obviously I don’t know very much about the importance of these counts being within the normal range to normal bodily function. My doctor doesn’t tell me much over the phone besides, this is what your count is, hold off on the chemo for another week, and get your blood drawn again next week. All I know is last spring, when I was on the first type of chemo that my doctor put me on, he kept taking me off it because my counts weren’t cooperating. And after about a month of being on it–but mostly off it–I started feeling nauseated and throwing up like I was at the beginning and I had to get a type of scan I had never had before and then I had to go to the hospital to make sure my bile ducts weren’t clogged. Later I found out that my tumors had started growing a lot again.

So you see, if it were up to me, and if my oncologist didn’t track my blood counts so closely, I would be taking the chemo right now. I keep thinking about something I read in the “biography of cancer” Emperor of All Maladies (which was excellent by the way). When doctors were testing the limits of chemo toxicity and the human body, they did a procedure where they extracted bone marrow, then gave the patient a high dose of many different types of chemo–so high, that they brought the white blood cell counts down to basically zero–and then they transplanted bone marrow back in to get the counts up. It was described in the book in a very macabre way, “bringing patients to the brink of death” with medicine…and then bringing them out again. My counts aren’t that low. And I think the goal is to allow me to live my life and to not have me sit in the hospital at “the brink of death.” That procedure was to knock the cancer out–it wasn’t intended to be a way of life as it is for me. So I probably don’t have this option. But still. Isn’t there another way? Holding off for a week over and over isn’t sustainable. I would rather be taking the chemo than taking but not actually taking the chemo.

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7 Responses to marrow

  1. Oh, Lindsey! I’m sorry things aren’t working as they should be. I’ll be keeping you in my thoughts and prayers for a quick recovery–insofar as recovery is an accurate word for someone who is actually hoping to be on chemo. You know what I mean. Much love and happy holidays/New Year to you and your family.

  2. Matt says:

    Hey Lindsey, as you said it right, do not try to predict things, put your energy in enjoying the present moment, when you feel fine, when you feel liked, loved, …
    This year again I’ll think and pray for your recovery, for a change in your usa’s injust health system and for the way you will spend the next 75 years of your long life 😉
    January 1st is just another day, but it’s yet another new shining one for you.

  3. ombansal says:

    well , i am really sad to know that the cancer is playing up again, but if it has been managed once, it can and will be controlled again, easy for me to say, dont worry , but almost impossible to do , as i am going through the same malady, it plays on my mind all the time, just cant shut off the mind. often times i think , best to surrender, surrender to the will of god, what will be, will be. and we have no control over this. fight, fight, thats the only option. keep your chin up and we pray for your recovery. take care

  4. Shadrach says:

    Well, I don’t know if you should embrace the Emperor’s cure just yet, one day at a time. However I can certainly see the appeal, I always want to find the solution pronto, so I’d be right there with you. But As you note no one wants to visit deaths door prematurely, or hang out at the hospital writhing in misery all the time. So better to wait, even if the waiting is an agony in and of itself. If the naseau returns, I am sure folks have mentioned medical thc, it’s not quite as fun as the booze, but it worked well for my grandpa, (and I can’t get my dad off it…).

    I’d say talk to your doc about a good timeline of when to worry. Be honest about your concerns, if there is anything you can do to help the counts (thickeners?, Diet changes timed around chemo sessions?,) Of course these might be more false leads like you’ve mentioned in the past, but the placebo effect is an effect none-the-less. This might just be me fishing for solutions, like I am prone to do (it worked in the book…why not me?). But its not good to have anxiety either.

    Regardless, I’m cheering for you. I don’t pray often, but I did today.

    • lindsey says:

      Thanks. 🙂 You know, diet changes around chemo sessions is a really good idea. Might be a good excuse to see if vegan is really the way to go… especially if it helps my liver numbers normalize even with the chemo.

  5. Kayla says:

    I just happened to come across your blog and I can relate to a lot of what you’re going through. I’m 24 and currently getting treatment for leukemia. Since its a blood cancer I know what its like when your chemo gets pushed back because of blood counts, it’s happened to me many times. The Emporer’s cure is actually just like transplants many people with blood cancers have to get, except they use someone else marrow or stem cells. Hopefully for me I won’t have to go through that, but it’s my only option if I relapse.

    I wanted to let you know that there isn’t much you can do to raise your blood counts but there is some vitamin supplement that people I know have taken to do so. I don’t remember which vitamin (I want to say one of the vitamin Bs) but it doesn’t work for everyone. If you keep having problems it might be worth looking into though.

    Im glad I can really relate.

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