Saturday, July 14, 2012

Too Long

David and I
Today included driving hither and thither (thither?) with Dawn and then Jules and then on my own, six hours off and on with David the nurse, Dawn, Jules, Tong, Susan the social worker, and David Attenborough, in the chemo room, being infused with Pepcid (famotidine), dexamethasone, and then three hours of highly histaminic chemicals extracted with alcohol from the bark of a Pacific Yew tree...chatted with Misha, acupuncture, moxa, short foot massage, dined at Miss Saigon (Misha was unenthused about Tu Lan, pronounced "Too long", the old tiny divey Vietnamese place on 6th), packed for spending the night at Jules' (which took an hour and a half, more on that later), and, once in San Carlos, watched the riveting last two episodes of the current season of Nurse Jackie. It's now late and I know it will take me hours to write this, but I also know I couldn't sleep right now anyway. I have around 15 emails I haven't answered, too.

Plus these clowns!
I was pondering this blog today and realized that I write certain things here for certain people, but don't actually mention that, even in a very general way. I may even be thinking of one person when I write...but then someone else usually asks if I was writing about/to them! Like a very close friend - after reading Things to do for your cancer patient pals -  asking me if I don't ask her for help when I need it - or something like that. This happens in person, too. Sometimes I can't anticipate what someone will take personally, I assume that everyone to whom it doesn't apply will know that. Then in hindsight, it seems obvious that they wouldn't. Because things that are obvious to me could well be obvious only to me...this isn't quite coming out right...

And one more. David Attenborough was
talking about The Life of Birds.
My point is that sometimes I have zero emotional intelligence. I write very directly, and regularly do not anticipate any subtlety in how it may be received. I do this not because I want to be harsh, or even that I feel harsh, but because I am completely unaware that it may be taken as a critique...So my point is: when you read my posts, please imagine I am saying the words with a kindly voice. If I make a suggestion, I am sincerely trying to be helpful, and if it is not helpful, please feel free to ignore it, or tell me how it effects you, or read it again hearing it in a kindly voice and ask yourself if it really applies to you.  There is no need to be nervous about saying the wrong thing or whatever to me. I love you for many reasons including that you are reading this blog. I wish I were able to always communicate that, such that there could never be any doubt.  

And now more content from today....

Chemo: David let me know a few things: I'm only supposed to take the glutamine for first four days after getting chemo. The steroid (dexamethasone) preceding the chemo infusion and that I also take in pill form for several days afterward, are what are making me hungry and manic. Also, insomnia. I often take Ativan (lorazepam) at night, which was originally for anxiety, but like so many of these drugs, other uses were discovered. Sometimes I take melatonin instead. Sometimes I'm so tired during the day but full of a kind of nervous energy, and I had no idea why...

Misc: I was thinking it would possibly be more digestible here if I grouped certain topics rather than mashing together the misc. But that level of editing seems too difficult right now. 

Misc: As you may have gathered, the clumps of hair falling off my head and making my scalp all patchy and cancer patient-y has been disturbing. Apparently I have become very attached to seeming healthy, even though technically I am not. After eight months of normalcy (not a real word), my head suddenly became a shorn radio blasting to everyone that I have cancer, that I am possibly even a modern grim reaper. It freaks me out, and my scalp is also starting to hurt. I think shaving it all off will help. Then I can just carry around a picture of the Pope and tear it up in an emergency.

Misc: David said I should check with the doctor that melatonin is OK to take. Misha said I should tell Tavakoli that all the interactions between the herbs and my chemo have been meticulously checked. She attributes my excellent blood counts to the herbs.

A common Mission district sculpture
Misc: In order to spend the night at Julie's I had to sort out and pack masses of things. Head coverings including for sun. Clothes for a 20 degree heat increase, laptop and book of notes for blog. (I actually find it kind of painful being separated from this blog.) Erg. keyboard (F key seems to have mostly recovered), glasses. And I forgot the rather crucial Ativan and psyllium husk. Camera battery charger. Book. Flip flops. Hiking shoes, but I think I forgot those too. Water bottle. Eyebrow pencil. Calendar. Snail mail. Julie offered to help me gather my things, I really should have taken her up on it. 

Factoid: The widely-used chemotherapy drug Taxol was discovered on my birthday! Exactly one year before the day I was born: August 21, 1962.

I got a sweet card from Tong today in the mail that made me cry.


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  2. I love your idea of carrying around a picture of the Pope so you can tear it up at a moment's notice. It'd work for oh so many occasions, n'est-pas? XO

    ps. mostly I doubt you're writing for moi, but I make it a practice to try to read everything anyone writes with a kind voice--helps keep me from getting really cranky.

  3. This is me trying to be helpful, I hope you will read it that way:

    1- See email re: lying.

    2 - I'm surprised they gave you Ativan, as far as I know it has a short half-life and is often used for panic attacks. I would ask about Klonopin or Valium, they are more slow and steady.