March 2012 chemo

Indigo-- I've had 3 and my next is on Mon. 23rd.

Lynn, looks like you're into the homestretch, then? *hoping so* here's purple energy to get you through the steroids.



I used to love Taco Bell, too; still like it but seldom eat there any more. It is 11 p.m. here and now I'm thinking about a Mexican pizza.... Maybe I'll get one to console myself after my hair goes....



The pajama stories made me remember - I drove my boys to middle and high school for years, during which time I decided since they had to be at school so early - no later than 7 - and because up until BC I was not enough of a morning person to get up early enough to shower and get ready before they did, I'd just throw on a jacket over my pajamas to take them, and get ready after. It crossed my mind a few times that if something ever happened that caused me to leave my car, it might get embarrassing, but the people at the Starbucks drive in never noticed or cared, and the time I got pulled over in front of the middle school for running a stop sign several blocks away, I had gotten my work clothes on, and the kids were more embarrassed than I was.



However, my luck did run out -twice. I also got a ticket for passing a car in the bike lane near the high school (your honor, in my defense, I made sure there were neither any bikes nor pedestrians in the lane and we were running late). I did have my pajamas on that day; not sure who was more mortified, DS#2 or me. At least the cop didn't make me get out of the car, and he stopped another kid driving by just to get him to give my son a ride up to the school. But that incident cost me about $90 and a fee shreds of my dignity.



The other time was really even worse. I was driving home and DS#1, who has a hard time remembering things, called me to say he'd left his books in the car, and could I drop them by the office because he was in class. A mom teaching her son about responsibility would have said no, but at that point I was worried that DS might not graduate on time, so back I went. I think I did have a jacket on, but the PJ bottoms were my oldest/ugliest, these capri length flowered things. I totally looked like a bag lady. The office was clear on the opposite side of the school and I walked miles of corridors between thousands of kids, wishing I was invisible.



Not my finest action hero moment. You'd think that would cure me of doing the Starbucks drive through in my pajamas but I still do - because I can!

Good for you, Kim! Hope the humidity lets up for you! Enjoy!

Finished my last a/c treatment last Monday and now onto to taxol. Halfway through chemo and feeling stronger already!!! Hope everyone's doing well today and enjoying the day!! I was told some people's hair begins to grow back after a/c and I can already notice some slight hair growth (also noticed leg hair trying to come back in also, never knew I would be excited by this!!!!!). Best wishes to all!

Hi again, Lynn, I see. Well, fwiw, having done BMX before chemo, while surgery isn't fun, I honestly think it's been easier to deal with than the chemo. In my case, I'm having delayed recon so that does mean two more surgeries down the road, and granted that the flap type recons are a lot more major than a simple and radical mastectomy like mine. One month out from surgery, though, I'm healing well and completely off even OTC pain meds.



I guess my point is that I'm hoping for you that you're getting the toughest part over with first. Stick with us - we're all in it together no matter what.

Good Sunday Afternoon.

I've been trying to follow along this weekend.  If I remember what I read, your taking over the world, issuing hot flashes to people as punishment and having a sit in at taco bell. LOVE IT!

MLB-yay on being done!

Lynn- I can relate I celebrate each tx then remember still have to do surgery then rads.  Maybe be done by thanksgiving. blah

We will see if this actually post. My internet is not cooperating this week. 

Then again, maybe I will just stay home...I just took a bath and got comfy on the couch and truly I think I will read the rest of the afternoon.  The wind is HOWLING and even though it is warm, I don't feel like just riding around for the sake of it.  I can look outside my window sitting on my couch, and save gas

I haven't even got to the point of thinking about reconstruction - I remember my BS recommended implants but don't know if that was just her opinion or what.  I assume she will refer me to a PS in due time.  I have lots of fat in lots of the right places though

Ok, back to my book...I watched Gia the other night on Lifetime so I got a copy of a biography of her life on Kindle "Thing of Beauty" - sad, sad story.

I basically hung in all day.  Moving slow mind you but I managed to get some laundry in, make a banana bread and dust.  I swear after this week no more carbs!  I'll induldge this week because its all I ever want the week after chemo but that's it. 

Shera - can't wait to see it!!!! Hugs!

LynnM- what is the website with the hair-lo?

BTW -- hilarious video:

Shit Girls Say to Girls with Breast Cancer

I went on line to look for some more hair.  I found a halo that looked super comfy!  Problem is it is $200!  YIKES, so obviously not doing that!  I am now thinking of options for the one I already own!  I have spent a lot of money on hair which I am ok with, but at one point you need to stop the madness!  Wish I could wear the scarfs but I look ridiculous in them.  Not sure why because I've seen a lot of women pull them off!  I look ok in hats with brims, but needs some hair around the bottom or at least cover my scalp!  

In the whole scope of things this seems so trivial, so I will deal and move on! 

I apologize ladies for the longest copy/paste post ever but it's very funny and I am technologically retarded, still back in hospital on my iPhone, seemed on topic, somehow... All I could do. Enjoy!!>

10 things not to say to someone when they're ill

When I was diagnosed with cancer, the support of my friends was invaluable – but I also learned that there are 10 things you should never, ever say to someone when they're sick



'People really did feel the need to reassure me that my hideousness was plain to see.' Illustration: David McCoy for the Guardian

Deborah Orr

The Guardian, Wed 18 Apr 2012 14.45 BST

What no one ever tells you about serious illness is that it places you at the centre of a maelstrom of concerned attention from family and friends. Of course it does. That's one of the nice things. It's actually the only nice thing. But it's also a rather tricky challenge, at a time when you may feel – just slightly – that you have enough on your plate. Suddenly, on top of everything else, you are required to manage the emotional requirements of all those who are dear to you, and also, weirdly, one or two people who you don't see from one year to the next, but who suddenly decide that they really have to be at your bedside, doling out homilies, 24 hours a day. It's lovely to hear from people when you're ill. But it's also lovely when they add: "No need to reply." The biggest shock, when I was diagnosed with cancer the summer before last, was quickly observing that people can be quite competitive in their determination to "be there for you", and occasionally unable to hide their chagrin when some other chum has been awarded a particularly sensitive role at a particularly sensitive medical consultation. Nobody means to be intrusive or irritating. It's all done with the finest intentions. But, God, it's a pain. Yet by not saying 10 simple things, you too, can be the friend in need that you want to be.

1 "I feel so sorry for you"

It's amazing, the number of people who imagine that it feels just great to be the object of pity. Don't even say "I feel so sorry for you" with your eyes. One of my friends was just brilliant at mimicking the doleful-puppy-poor-you gaze, and when I had been subjected to a sustained bout of it, I used to crawl over to the local pub for lunch with him, just so that he could make me laugh by doing it. Don't say "I feel so sorry for you" with your hand either. When someone patted my thigh, or silently rested their paw on it, often employing the exasperating form of cranial communication known as "sidehead" at the same time, I actually wanted to deck them. Do say: "I so wish you didn't have to go through this ghastly time." That acknowledges that you are still a sentient being, an active participant in your own drama, not just, all of a sudden, A Helpless Victim.

2 "If anyone can beat this, it's you"

Funnily enough, it's not comforting to be told that you have to go into battle with your disease, like some kind of medieval knight on a romantic quest. Submitting to medical science, in the hope of a cure, is just that – a submission. The idea that illness is a character test, with recovery as a reward for the valiant, is glib to the point of insult. Do say: "My mum had this 20 years ago, and she's in Bengal now, travelling with an acrobatic circus." (Though not if that isn't true.)

3 "You're looking well"

One doesn't want to be told that one's privations are invisible to the naked eye. Anyway, one is never too ill to look in a mirror, and see a great big moon-face, bloated with steroids and sporting the bright red panda eyes that are triggered by that most aggressive and efficient of breast-cancer drugs, Docetaxel. I knew I looked like death warmed up, not least because I felt like death warmed up. Nobody wants to be patronised with ridiculous lies. They are embarrassing for both speaker and listener. If your sick pal wants to discuss her appearance, she'll ask you what you reckon. It'll be a leading question, so take your cue from her.

4 "You're looking terrible"

I know it sounds improbable. But people really did feel the need to reassure me that my hideousness was plain to see. One person told me that while I'd put on a lot of weight, I'd of course be able to go on a diet as soon as I was better. I wouldn't have minded quite so much, if she hadn't arrived bearing a giant mound of snacks and cakes, a great, indiscriminate pile of stuff that suggested she'd been awarded four minutes in Whole Foods by Dale Winton, in a nightmarish haute-bourgeois version of Supermarket Sweep. And, in fact, I haven't gone on a diet. Somehow, being a size 10 doesn't seem tremendously important any longer. On the other hand, when I said: "Don't I look monstrous?" I was asking people to help me to laugh at myself – which many did – and to tell me that this too would pass. One of my friends took photographs of me, behind a curtain in the hospital, looking comically interfered with by surgeons, and festooned with tubes and drains full of bloody fluid. We laughed so much that I probably came nearer to death right then than at any other point.

5 "Let me know the results"

Oddly, one doesn't particularly want to feel obliged to hit the social networks the moment one returns from long, complicated, stressful and invasive tests, which ultimately delivered news you simply didn't want to hear. Of course, this request is made because people are worried. But, a bit of worry is easier to bear than the process of coming to terms with news that confirms another round of debilitating, soul-crushing treatment. If people do want to talk about such matters, they really need to be allowed some control over when, how and to whom. Contacting their very nearest and dearest instead is fine, as is volunteering to spread the bad tidings to others who are also anxious.

6 "Whatever I can do to help"

Apart from anything else, it's boring. Everybody says it, even though your assumption tends to be that people do want to help, of course. That doesn't mean that help should not be offered. But "Can I pick the children up from school on Tuesdays?" or "Can I come round with a fish pie and a Mad Men box set?" is greatly preferable to: "Can I saddle you with the further responsibility of thinking up a task for me?" If you do happen to be on the receiving end of "whatever I can do to help", be shameless. Delegate with steely and ruthless intent.

7 "Oh, no, your worries are unfounded"

Especially when those worries are extremely founded indeed. Like a lot of women, when I was first diagnosed, I was disproportionately focused on the prospect of losing my hair. One friend, every time I tried to discuss this with her, would assert – baselessly – that this wasn't as likely to happen as it used to be. Actually, it's still very likely, and indeed it came to pass. But the crucial thing was this: I didn't want to talk about how pointless it was to be fearful. I wanted to talk about how sorely I dreaded the day when I was bald. When people want to talk about their fears, they want to talk about their fears, not to be told, quite blatantly, that their fears are imaginary. Even when they are imaginary, there are more subtle ways of offering assurance than blank rebuttal. Usually, an ill person brings something up because they feel a need to discuss it. Denying them that need is a bit brutal.

8 "What does chemotherapy [for example] feel like?"

It is staggering, the number of people who find it impossible to restrain their curiosity. Swaths of folk appear to imagine that exactly what you need, in your vulnerability, is a long and technical Q&A during which you furnish them with exhaustive detail pertaining to the most shit thing that's ever happened to your body in your life. If someone wants to talk about their procedures or their symptoms, they will. If you have to ask questions, that's prima facie evidence that this is not what they'd discuss, if only they could be gifted with just a smidgeon of control over the conversational initiative. Again, the golden rule is: take your lead from the person undergoing the experience. I tended to want my mind taken off all that stuff, and have a nice chat about nice things. One of my friends, asked by another what she had been up to lately, found herself saying she'd had a great time visiting Deborah in hospital after her mastectomy. It had indeed been a lively visit. Eight lovely people had turned up all at once, and it had been quite the rambunctious gathering. When she told me that it had been an absurd social highlight for her, I felt fantastically proud.

9 "I really must see you"

Don't say it, particularly, if you are then going to indulge in some long and complicated series of exchanges about your own busy life and the tremendous difficulty you have in finding an actual window, even though this appointment is so awfully important to you. At one point, I was sitting in a chemotherapy suite, large and painful cannula in the back of my hand, pecking out texts to somebody who had to sort something out this week, and wouldn't take "Let's do this later" for an answer. When I reluctantly picked a particular time from the list she had bossily pinged over, she replied that she'd have to bring her toddler son with her if it really had to be then. I knew I couldn't handle a tiny visitor (and wasn't sure about the ability of the tiny visitor to handle it either), so we then arranged something else. A few days later, at the very time of predicted childcare crisis, I saw a tweet from her, declaring that she was wearing a new cocktail dress and held up in traffic on her way to a long-anticipated and very glamorous do. She had clearly just buggered up her dates and didn't want to say: "Whoops. Actually, I'll be at a PA-A-ARDEEEEE." Fair enough. Sweet, really. Nevertheless, the planning thing is an arse. I liked it when people just said, "Can I come by after work this evening?" or, even better, "I've got tickets to the theatre on the 25th. Tell me on the day if you can face it."

10 "I'm so terribly upset about your condition"

One friend, when I told her the initial news, blurted out: "I can't cope without you!" and unleashed a flood of tears. (I hadn't sobbed myself at that point. I never did.) Ages later, when she emerged from the loo at the pub I had designated as Telling People HQ, she explained that she'd been caterwauling unrestrainedly when a kind lady asked her what was wrong. Having sketched out her troubles, she got this reply, or something like it: "What? You're weeping in the lavatory, while your friend is in the bar having breast cancer? Pull yourself together, and get out there." This had inspired another torrent of waterworks. And that is the most important thing to remember, when your friend is facing a frightening and possibly fatal illness: it's not, not, not about you. If you're too upset to be in a position to comfort your friend, send cards, send flowers, send presents. But don't send your ailing chum a passionate storm of your own wild grief, personally delivered. It's a little too needy, under the circs.

If you recognise things that you have said or done yourself within this list, don't feel bad about it, at all. I most certainly have, and I've said and done much, much worse too; it took being on the receiving end before I realised what it could feel like. The thing is this: giant illness is a time of great intensity, and even the most cack-handed expressions of support or love are better than a smack in the face with a wet tea-towel. People feel helpless when they see that their friend is suffering. Sometimes – often – they say the wrong thing. But they are there, doing the best that they can, at a terrible, abject time. That's the most important thing of all. I look back on those grisly moments of ineptitude and clumsiness with exasperated amusement and tender, despairing, deep, deep fondness. The great lesson I learned from having cancer, was how splendid my friends were, whatever their odd little longueurs. They all, in their different ways, let me know that they loved me, and that is the most helpful thing of all. I'm so lucky to have them.

KCB

Loved it!

Loved the link Shera and I went to her website - seems like a cool chick; bookmarked it to go back and look at later.  (www.jennysaldana.com)