Tipping point

Quick update, ’cause if/when I don’t update regularly, people start to think there’s something wrong.

Nothing is wrong. I had chemo last week and it went as well as chemo ever goes, with the exception of a couple of minutes following a Benedryl infusion when I couldn’t talk. My brain just stopped working and in the middle of repeating something back to Dara, my chemo buddy, I forgot what I was saying. Then I pretty much forgot how to talk. I tried to explain that I couldn’t remember what I was saying (which was strange since I forgot what I was saying as the words were coming out of my mouth), but I couldn’t figure out how to put together a sentence that would convey that thought. So other than momentary brain damage, everything is great!

And things are OK, they really are, but I am getting tired. Physically tired. I can’t quite shake it. It isn’t as bad as when I was struck down with strep, but it’s close. There have been a couple of days where I’ve spent more time in bed than out, and I expect there will be more days like this. There have been mornings where I’ve dragged myself out of bed only at nature’s urgings. I know I have reason for feeling like this, but there is this voice inside my head that tells me I’m lazing about because I’m lazy. It annoys me because I know it isn’t true, but I can’t shut the voice up. And the nerve damage in my feet is a bit more pronounced, though not enough to be a source of concern. It is, however, another source of annoyance.

Speaking of sources of annoyance, this “Scientists cure cancer, but no one takes notice” article that’s been making the rounds is really starting to piss me off. First, sensational titles like that rarely suggest the article to follow contains the truth. Second, the actual study carried out involved only five terminally ill, nothing-to-lose human subjects of which “some” experienced clinical benefits. “Some” of five does not a cure make. As this excellent blog entry notes, there is a “germ of truth” to the story, but it isn’t nearly as simple as “scientists discover cure for cancer, evil Big Pharma refuses to fund research” or however you want to spin it. I know a lot of you who read this blog probably posted links to the article, and I’m sorry for taking you to task, but it’s frustrating to see how quickly and thoroughly misinformation spreads, especially when that misinformation strikes close to home.

[Updated to include part of Sandra’s wonderful comment posted below. A few other things to add about that “scientists cure cancer” article: 1. The research was conducted in 2007 and they have since discovered that treating with DCA can actually make some forms of cancers worse. 2. Cancer is not one disease. Cancer is multiple diseases that are super complex and differ from person to person even. So to make such a general statement is simply ignorant! 3. If it sounds too good to be true, it probably is.]

And now for the numbers portion of this blog. I have (provided there are no more chemo disturbances) 37 days left until I complete this round of treatment. On Thursday, I will inject the first of my $225 shots into my leg to encourage my bone marrow to produce a high enough number of neutrophils to prevent further delays of chemo. I’ll do that for five days; here’s hoping it works. A single course of Neupogen costs $1,225 dollars. Thanks to workplace benefits, I pay $2.50. Just another reason to love my job.

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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 Tipping point

  1. Linda says:

    Glad you posted! I was wondering, and hoping that your last chemo went as scheduled and all was okay. Ban that word lazy from your mind – chemo related fatigue takes you hostage and you have no choices. Take care of yourself and let those phils grow!

    Linda

  2. Sandra says:

    I’m glad to hear chemo is going well. Numbness of the feet is annoying, but at least it’s not in your fingers, that’s so much worse.

    A few other things to add about that “scientists cure cancer” article:
    1. The research was conducted in 2007 and they have since discovered that treating with DCA can actually make some forms of cancers worse.
    2. Cancer is not one disease. Cancer is multiple diseases that are super complex and differ from person to person even. So to make such a general statement is simply ignorant! I can totally understand why you were mad.
    3. If it sounds too good to be true, it probably is, so people – do your research and don’t believe everything you read!

    hugs!

  3. I’m really sorry I’m not there for Chemo Buddy Duty, but hopefully my care package will arrive in advance of the next session…I’m determined to stay in the game!

  4. Jenna MacKay says:

    What a strange experience the forgetting of how to talk must have been… and I am happy the rounds are almost over. I love you and you are NOT lazy. But you know that.

  5. Lynda says:

    Alicia, have you ever considered Neulasta instead of Neupagen? Neulasta costs about $1200 and it’s only 1 injection, therefore side effects are gone quicker. Just thought I would share what I used.

  6. colleen lisi says:

    I happened to land on your site whilebrowsing….i was diagnosed April 24th with IDC and will get chemo as sonn as port is in place….i am sooo dissapointed i was suppose to get port on Friday but dr. fel i had an dinfection in a site that i had skin ca. removed and canceled the surgery while i was on the operatig table. I am now going to try some all natural cures…..i cant wait any longer for all the appts. i had to cancel onco. as well because she wont see me w/o a port. I am more than frustrated, but feel i am now jsut going with my gut, and get the all natural treatments. I am not sick now and refuse those damn chemo treatments…….i guess it worked out for the best i did ot get the port. I am 52 years old, my family is not so happy but i feel its best for now. I am not doing this damn waiting game with all these dr’s. summer is here and i plan on sitting in the sun and living while i can! I know i may sound like some sort of psych pt. but……..i am not giving into wetern medicine crap of hurry up and wait!

  7. Ann Blewett says:

    Alicia, I was one of the older women at the Wellspring/Odette House meeting on March 23, I was the one with the really short salt and pepper hair. We had another meeting on May 3rd at the same location and I was sorry you weren’t there. I read and clipped your article in the Toronto Star and I have bookmarked your blog.

    We are having another meeting to discuss setting up a regular support group and this takes place June 15th at the offices of Ovarian Cancer Canada on Front Street. However, I am second guessing myself as to whether to attend or not. I am not absolutely sure I will benefit from a support group. Perhaps I don’t really know what I require from a support group.

    Perhaps it will more benefit me if I check out programs at Wellspring like meditation, yoga, etc. and gain my strength from that. I do know that after the last meeting, I felt strangely “down” for a number of days.

    I am an older lady (as mentioned above), 66 years of age, and I feel that one’s needs differ at different ages. I am lucky to have reached 66 but I still worry about the future and dread every oncologist’s appointment although I am currently in remission. However, it is only a year since my surgery.

    I have benefited greatly from reading your blog and I will be following your journey. All of our journeys greatly differ but we all hope and yearn for a cure for this insidious disease.

  8. browngrl says:

    Good to hear from you. Wish I could think of a wise and useful comment about the chemo, but all I think of is “cancer is a bitch”(pardon the language). Hope the “chemo brain” has improved and hope your marrow is busy making enough neutrophils to keep you on your chemo schedule.

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