Hi everyone! I am trying to relax at the end of a strange day. I can't explain why it was strange exactly, but it is kind of a bodily feeling. Actually, I do know what set me off on an unsteady foot. I went to radiation alone today - for the first time, which was kind of liberating. That was fine. In and out.
However, then I had my Tuesday appointment with my radiation oncologist. I can't quite figure it out, but she somehow felt the need today to remind me how serious brain cancer is. She reminded me that she wouldn't be able to take scans to check progress until six weeks after radiation ends -- which I knew already. She was asking me about plans to go back to Jordan but I had already told her I am not getting on any planes until I know where we are with the radiation. Then she reminded me it is possible that some tumors even grow and we would need to follow up radiation with further stereotactic radiation. I asked about that and she explained it is out-patient -- a serious, direct blast of radiation to a specific tumor. Dunno -- doesn't sound that bad to me. Whatever. She then said something like, "Well for some patients brain cancer is the end, but it possible to live with it too." I asked her if she had ever seen the tumors completely disappear. She said never with melanoma -- but she does have a patient who has been living with it for a year and half now and functioning well -- working, just married -- coming in occasionally for a stereotactic blast of radiation to a new tumor. I was just annoyed to be having this conversation only midway through treatment when I feel like I am doing pretty well, all things considered! I told her that I think my numbness is slightly better and she was surprised and pleased. I asked her if she is worried about anything in particular about me and she said no, I seem to be doing well. Whatever. Then, happily, she came up with a plan to start weaning me off steroids -- god that would make me feel better. So anyway -- I took a long, slight lonely (but I liked the loneliness) rambling walk through the noisy streets of New York. Trying to figure out what I was supposed to take away from that conversation. Am I not taking this seriously enough? I am still thinking about that.
I also asked about brain radiation in general and why it kills tumor cells but not healthy cells. She explained that cancer/tumor cells are not healthy cells -- they are inherently damaged and do not have DNA capacity to repair themselves when damaged. Healthy cells, on the other hand, have the ability to repair themselves with DNA. So the reason they give the head a little radiation every day for an extended period is so that they give healthy cells the opportunity to repair themselves each day -- whereas the cancer cells can't do that. If they were to just give a massive blast of radiation to the whole brain once, they would kill everything and the healthy cells wouldn't be able to repair. But by using the slow, daily approach, you enable the healthy parts of your brain to repair and live. I thought that was a good and simple explanation! It plays in with my current character imagery, because today the good guys had truly grown -- they are just dwarfing the bad guys, who are turning into gooey, melting masses.
The other highly annoying twist to the day was when I got home and decided to sort out my pills and take out the extra steroids. You aren't going to believe this. I had been reading pill dosage wrong and for the last two weeks I have been taking DOUBLE the steroids I was supposed to be on! I thought the pills were 2 mg each and they were actually 4 mg each!!!!!! NO WONDER my neck is like a football player's and I am feeling so physically strung out! NO WONDER I can't sleep and the water weight on me feels like a sloshing swimming pool! SO -- today I get to cut down to the dose I was SUPPOSED to be on all along. It is going to take longer than expected to wean me off the steroids now -- apparently the body gets very dependent on them and going off them can be an emotional exercise. Can't wait!
What else? Oh -- my hair is definitely starting to fall out. I promise bald pictures by the end of the week.
My wonderful colleagues in Amman actually sent me some work to do today, which was a god-send of a distraction! It feels good to be slightly useful again -- a non-self focus!
I did eat well today and that felt good. Tomorrow I have acupuncture again, which I am looking forward to!
David seems to be doing well in DC having meetings and seeing friends. He plans to come back to NYC on Thursday and we will take off on Friday after radiation for Massachusetts for the weekend to see his family for change! That will be fun. It will feel good to get out of New York.
I think I need to pop some sleeping pills right now and try to force my poor body to relax for a couple of hours! More tomorrow!
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It's Mara
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10 comments:
Oh Mara,
you tuttebel for taking a double dose of the steroids.....well, eating half should do a lot...
A weird conversation ideed with the oncologist....I neither can't figure it out ...Just leave it and go on, I would say. Thanks for explainig the brain-cell-radiation logica in plain language.!I'm missing the foto"s in the blog; am looking forward to them when David is back. Hope you are not too upset about the hair falling out...I'm sure you'll look great also without it!
Keep it up, girl!!!Let's get the %##@@&* !!! (are you allowed to swear in a blog ?)(in Dutch ?)
big hug from Holland,
Ems
Mara, sweetie, I only take the bright side of this whole strange day, not only because this is typical of me (as it is of you), but because, by a funny coincidence, I, too, talked to my friend-doctor (the lady who operated on me last fall and she is one of our best oncologists)this morning , too, so I just asked her what in her opinion should be the steps to be taken in your case (I never mentioned what I already knew about your treatment!) and, you won't believe it! - she sounded as if she was reading the description of "One of Mara's days on radiation and steroids"!!! And then she explained to me in plain language and simple words about all the advantages of that kind of treatment and she told me about several cases of women - cancer-survivors, who got either brain, or lung methastasis, or both (at a much older age than yours, at that!!!), and they only came in, periodically, to take a blast on a newly-growing tumor, and were functioning and lived actively for 20-30 years. You can imagine how relieved I felt: If this could happen in small Bulgaria, where medicine is... well, not exactly far, but pretty much behind, and there's noone to compare with you, optimism-wise and self-help-wise, then... we should be expecting a chain of expected and purely-logical miracles! Mara, darling, I'm so excited for you today, darling! Have a quiet day, my dearest, rest a lot and feel better! I love you so much!
Zlatna
Das is funny, I vas zinking you talking a lot like ze Arnold wis all zees steroids in ze system! Had we only known this earlier, dear, we could have sent you into batting practice with Barry Bonds, or on a bike race with Floyd Landis, just for giggles.
I have a new visualization suggestion to address your oncologist's weird patient manner. Imagine that the trap door on the side of HER head opens and the figures peek out. They are a little timid at first. Now I want your super tumor fighting hello kitty action heroes to step outside your trap door and greet her head trolls and have a little chat. Your pumped up steroid packed cancer fighting guys need to engage in a little action hero mentoring. A heart to heart talk between your head heroes and hers will do some good. And if they have to beat some sense into them, so be it. XO, Liz
Nou, Mara, the woman who made a "comic-book" is called Marisa Acocella Marchetto : and her book is called, in Holland, : Chemogirl.
She says: cancercells are green, creepy devils , and she pictures hem as green types, with queer eyes and a red tongue out and their middlefingers stuck up.
Just like you visualised these #####
anyway I'll send you the article by mail.
Do you know, the Dutch Cancer Association just put out a bracelet(pink) -with-3-things-hanging-from-it, that ons can buy. the idea is: you put it on your wrist with 3 knots and at each knot you make a whish. Then: you leave the bracelet on till it falls off spontaneuosly.and then: your whishes'll come through.
To make a long story short: I've knotted the bracelet around my wrist and whished myself silly for you and I'll send a bracelet to you to de the same...
the site is : www.borstaknker.nl slash geluksarmbandje but maybe it's only for sale in Holland. When you need some, just mail me.
In the meantime: courage!! and eat some wholesome nuts or whatever.
much love from here, to you there, Ems
Bubeleh,
Yes, it's yack-yack Jewish mother again ;-). First, I'm so glad your friend ems told you about Marisa Acocella Marchetto's book - if it's the one I'm thinking about, it's a wonderful "graphic novel" (the high-falootin' name for comic books these days) about a New Yorker cartoonist dealing with her own cancer and it's just WONDERFUL. I've been thinking about it ever since you started your blog and wanted to tell you about it too, but for the life of me couldn't remember either the author's name or the book's title (the curse of an aging memory . . . ). I highly recommend it - it's funny, poignant and (of course) has great pictures.
Interesting about your doc and her somewhat strange conversation with you about brain cancer. Docs are great, wonderful, dedicated, etc - all that good stuff - but also kind of weird. I sometimes think they believe it's partly their job to "correct" patients who seem (to them) to have their hopes up too high, and aren't being "realistic" (to them) about thier progonsis. You'll never ever find a doc anywhere who'll ever say "yes, I believe you're 100% cured." Perhaps she was reacting to your your strong good spirits and your optimism? I'm sure she has your well-being at heart; maybe is just concerned that you'll be side-swiped with depression or something if the cancer doesn't completely dissappear over the next weeks and months . . . who knows? Would you feel comfortable talking to her directly about the conversation and voicing your uncertainties about it with her? If that didn't feel like it would be too awkward, that might be a good way to go.
If not - well, certainly seems to me like you're taking this whole business seriously. I mean, look at all the time and effort you're putting into taking care of your health right now! You take your pills regularly and show up for radiation every day. And frankly, I think optimism is always a good thing, in any situation, no matter the actual or eventual outcome. It helps keep one strong mentally and emotionaly and keeps one's immediate quality of life calm and enjoyable. And how could that possibly be bad for one's health and healing?
Well, I'm going on and on as usual ;-). I have two wonderful outings in Brooklyn to suggest that I think you and David would really like (I didn't know he was from Massachusetts! Whereabouts? Tell him hello from a fellow Massachusettsian ;-). But I'll send them to your yahoo email so I don't bore your other blog pals (and hopefully not you! ;-).
Take care of yourself darling.
Love, Lisa
Jeez Mara, first it's Barry Bonds and now you. You've ruined your chances of playing in the pro-wrestling and NFL football leagues, haven't you? Bummer. They just will not tolerate the steroid abuse =P
Nevermind the remarks of the doctor. She's under huge obligation to disclose any risks whatever the probability. Think about all the warning labelas we see on labels of everyday over-the-counter things people massively consume, e.g. Advil, we'd all be terrified out of our minds wouldn't we? "May cause severe this, heart attack, 3-eyed children, dizziness, blah blah blah." Go read the warning sign in front of the super-double-upside down loop roller coaster..It doesn't mean that's going to happen but if we weren't warned of the possibilities then there'd be massive outcries of liability.
Anyway, I like the "good guys" b/c it sounds like their kicking ass!
XOXO
Blanche
I sometimes wonder whether doctors ever go through classes on effective patient interaction. They never seem to hit the middle ground. You could write a book on all this and make your fortune with it Mara - making me laugh about things other people would have us crying over is quite incredible. I thought of you today as I had acupuncture. Mine is a Mexican woman who hands out very down-to-earth practical advice at the same time. And if I disagree with her (such as when I mentioned that I didn't think the Oregon coastline was a nice as the Cornish one in the UK) she twiddles the needs and sends such chi down my legs that I just have to agree with her!
miss you
Anna
mara,my dear friend
jo here and I just wanted to weigh in on the positive thinking vs. medical model sobriety. We know this..it isn't about the numbers and the "who lives how long with what disease." It's "what am I doing today, right now to make my life worthwhile, & how am I sharing my life with others," given the @#!**% I have to deal with. We all have @#!!!# in our lives to face. I support your ebullient tackling of Big Apple life (even with the new diet--it's still NYC). I am in LOVE with your positivity and you radiate your joy to legions of people all over the world. Go ahead, have your bad day, double steroid-dose, tea-cup burn days but life is for living and you are living it with passion and integrity. We need the doctors and their objectivity but at the end of the day, we need LOVE and we need PASSION. You have both my sweet friend. keep up the good, hard work, and try to keep your pill box organized :) Oh yes, Eliot heard I was writing and he sends a big HELLO! xoxox jo
mara,my dear friend
jo here and I just wanted to weigh in on the positive thinking vs. medical model sobriety. We know this..it isn't about the numbers and the "who lives how long with what disease." It's "what am I doing today, right now to make my life worthwhile, & how am I sharing my life with others," given the @#!**% I have to deal with. We all have @#!!!# in our lives to face. I support your ebullient tackling of Big Apple life (even with the new diet--it's still NYC). I am in LOVE with your positivity and you radiate your joy to legions of people all over the world. Go ahead, have your bad day, double steroid-dose, tea-cup burn days but life is for living and you are living it with passion and integrity. We need the doctors and their objectivity but at the end of the day, we need LOVE and we need PASSION. You have both my sweet friend. keep up the good, hard work, and try to keep your pill box organized :) Oh yes, Eliot heard I was writing and he sends a big HELLO! xoxox jo
Hi Mara, Thank you for sharing all your life and feelings with us! It was really interesting to read about your conversation with your doctor. I have the feeling that she doesn't know that the woman sitting in front of her is the most optimist,strong and wonderful woman I've known in my long life. Does she perhaps envy your optimism? Who knows? Please continue like this and you will win this fight again. Enjoy your weekend with David! Big hugs from your Berlin family! We miss you so much!
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