Let’s make that 49 more days

Chemo was cancelled today.

My blood counts, which were low on Monday, hadn’t recovered enough for treatment today. But they had gone up, and I thought they were in the safe zone, so after I left the chemo waiting room, I went to talk to the nurse who works with Dr. M. I started crying when I saw her and asked why chemo was cancelled if my blood counts had gone up*. She said she would call my oncologist and talk to her about it. When she came back, she told me that my counts weren’t as high as Dr. M. wanted to see, but that she (meaning Dr. M.) would see me at her fourth floor clinic if I wanted to talk to her about it.

The nurse suggested I ask Dr. M. about putting me on Neupogen after my next chemo to try to prevent further delays — Neupogen is an astronomically expensive injectable that stimulates the growth of neutrophils, the type of white blood cell most responsible for immune function (or something like that) — and since it was a drug I had to go on the last time I went through chemo, I decided to visit Dr. M. in her clinic so I could request a prescription. I know my body and how it responds to chemo, and I know that more delays in treatment are inevitable if I don’t get on this drug after my next treatment.

I had to talk to another nurse — my third — about my treatment delay (and how frustrating I found it) before I saw Dr. M. By the time she came in the room to talk to me, I was upset and annoyed and pissed off. She told me she was worried about how I was reacting to the delay; that it happens to lots of people and that other people don’t get as upset as I was. But this isn’t my first treatment delay. Sure, it’s the first one due to chemo, but I already delayed the start of chemo because of post-surgical infections, and then the second treatment because of the second surgery, and then the third treatment — the only one to happen on schedule — knocks my blood counts so low that I’m off schedule again. Of course, I’m frustrated. I’ve been dealing with this for almost a year, it will have been over a year by the time it’s all over, I’ve organized my entire week around this treatment and now have to do that again next week, and I psychologically prepared myself for treatment today and I really just want things to, I don’t know, go right for once, so forgive me if I’m a little frustrated and upset. I’m handling this whole situation pretty gracefully about 95% of the time; it would be nice to be cut a little slack for the remaining 5% of the time when I need to throw a bit of a fit.

Anyway, rant over. Chemo has been rescheduled for next Thursday, I’ll start injecting myself with Neupogen five days after my treatment, everything is what it is. The silver lining to this cloud was that a) I got to bum around in the sun all day and b) I got to go to the Kris Knight opening at Katharine Mulherin Contemporary Art Projects, where I bought my first piece of art. Or rather, I should say that I will be buying my first piece of art in three installments, the amount of which I won’t mention here. Suffice it to say, I will be living frugally for the next three months. But I’ve wanted a painting by Knight since I first saw this exhibition three or four years ago, and given the crappy year I’ve had, I think I can justify buying myself a piece of art. And you know what? Retail therapy really did improve my mood. And my oncologist wants me to “talk to someone.” I think I am coping quite well, thank you (if committing yourself to spending a large sum of money counts as coping, that is).

*I have since figured out that my current oncologist only goes through with chemo if my neutrophil level is at 1.5, while my Montreal oncologist would treat at 1.0, which explains my confusion and frustration at finding out my treatment was cancelled for a neutrophil level of 1.2.
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About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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8 Responses to Let’s make that 49 more days

  1. Sending much love your way! I know it’s hard, frustrating and at times it seems unfair but you are a strong and amazing person! Meeting you in Nov. was very uplifting for me and helped me get through my first round (that had no effect) of chemo and I know that you will do amazing next week!

    Kris Knights art is AMAZING! I might have to go out and buy me one of my sad little collection! Think they would trade with me? HAHA

  2. Alicia says:

    He’s GREAT, hey? There’s a picture on facebook of the piece I bought.

    I was so happy to read your good news today — it made me less pissed off about being delayed. You and me are going to keep kicking our ways through this muck. You inspire me, sir.

  3. Linda says:

    I think you are doing amazingly well! I go to Gilda’s club (in Barrie), and until I talked with others there I thought I was the only one feeling the same way as you – everyone in the clinic waiting room looks so calm and collected – but the reality is that being delayed is good reason to be pissed and that being told you should “talk” to someone is not acknowledging your right to your feelings (not to mention a little dismissive). Frustration seems entirely appropriate to me. And a lot more people are feeling that way but not expressing themselves to the docs.

    Horray for retail therapy :0)

    Linda

    • Alicia says:

      Thanks, Linda. It seems totally appropriate to me, too, to feel frustrated, but guess some patients are able to remain more stoic than I am…I didn’t really feel like my oncologist was being dismissive — she seemed way too concerned for her to be just brushing me off — but I think that since she’s seen me weather worst things than just a chemo delay, my meltdown was a bit surprising to her. Oh well, we all have our breaking points.

      And doesn’t it feel good knowing we aren’t alone in our feelings?

  4. browngrl says:

    Sounds pretty frustrating. I’m a doctor and stuff like this reminds me to always ask myself : “How will the patient perceive what I am doing?” and to try and explain things. Not sure I succeed all the time but hopefully my patients do see that I am trying my best. Anyway, hope your next treatment goes better. (ps I found your blog through the Toronto Star and found your story so moving I have been following your blog since.)

    • Alicia says:

      As a patient, I appreciate that. My oncologist is pretty great, but I think the reasons for my delay could have been better explained (maybe by using some actual numbers) and that maybe she could have been more sensitive to how upset I would be by a delay. It was one of the things we discussed before I started chemo — I had a terrible time with my counts the first time I went through chemo, and I told her that I found it very difficult to deal with and wanted to know that we would have a plan in place to help my blood counts if they started dropping so much that I couldn’t have chemo. It didn’t come about the way I would have hoped, but I do have a plan in place now, so I’m pretty happy about that.

  5. WG Radlein says:

    All the words I know sound so trite and inadeqiate to tell you how much it were different for you. I am so sorry that you are afflicted. I have lately been saying that “Life Ends but Existence is Forever”, but I cannot elaborate. Wishful thinking maybe. I, together all the nothers , including those who have not known of you love !you. Please be!

  6. browngrl says:

    Hope the chemo goes well Thursday!

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