Catia Bitching Cancer

First post after surgery, here it is. I was in a way dreading it. Where should I start? The last thing I remember before waking up in the hospital room without my left boob is Dr. McDorky marking my breasts with a felt-tip pen and telling me I was lopsided. I was oh so happy that it was slightly cold in that room, so that my breasts were all perky, but he plainly said it didn’t matter a bit. That’s what I get for choosing McDorky over Cute Plastic Surgeon, I thought! But I got the nurse giggling over my fake boob-glasses and various boob paraphernalia that Bruce later had to take back with him. I got a lot of comfort from the presence of all my friends through the gifts and cards I brought with me to the pre-op room.

When I woke up in my room, I looked down to check through the bandage and all I saw was a mini cleavage that gave me a measure of relief. Then friends came over to see how I was and laugh at and with my groggy self. Kristin and Cynthia even gave me a foot and hand massage. S-P-O-I-L-E-D, that’s my name!

Saturday, early afternoon, Gary came to visit too, and insisted that cleavage doesn’t matter, but he’s a man beside a priest, so what does he know? Dr. McDorky came while Gary was there, and he sent everybody out. My parents attempted without success to convince Sandro to help them communicate, but Sandro was occupied with his GameBoy and continued to ignore the adults around him. But he didn’t ignore mamma: he moved into my bed as soon as he arrived in my room, and though he never let go of his GameBoy, we were just content to lie next to each other. He’s been so wonderful ever since. He even saw my wound and matter-of-factly admired it. He did ask me whether the drainage tube hurt, but he didn’t seem phased from the 10-in. red scar across what used to be my left boob.

As for me, I watched myself in the mirror as soon as I came home that day, after Dr. McDorky gave me the go (and after giving me post-op instructions laced with what he thought were humorous details). I won’t hide it: it’s nasty! It runs across my chest for about 10 inches, starting 2 inches left of the sternum curvying its way through to my left underarm. Then I have the scar from the biopsy and lower on my side a 2-3 in. scar where the valve from the expandable implant is sitting temporarily until the breast is inflated to the proper size. For someone who had only two small scars over all her body for her entire life and never was put under until 2 weeks ago, that was quite a change. But I am getting used to it, and Sandro’s reaction helped a lot. But more about that later…

This appointment scheduling thing is becoming comical. Yesterday I received a reminder call for an appointment that I didn’t know I had, and no reminder call for an appointment I did know about.

Today I saw another plastic surgeon for a second opinion (the appointment I knew about). I will call this second doctor McDorky. The first plastic surgeon I saw last week is also known as Cute Plastic Surgeon (despite Serena’s opinion to the contrary). McDorky doesn’t really look at me when he speaks, he mumbles rather than talk, he doesn’t allow for a lot of room to ask questions, but offers very exhaustive (and exhausting) explanations, has his own sense of humor but doesn’t laugh with you. Serena was looking at me in desperation, yawning and yearning for a Pocket Coffee (for those of you who have never had one, they are chocolates filled with espresso Y-U-M-M-Y!). One also wonders how he can be the famous plastic surgeon all the nurses have been praising and have food stains on his pants. But he has very well cared for hands, obviously, pink and soft, and well manicured. Cute Plastic Surgeon too has nicely kept hands. I wonder if that’s a plastic surgeon feature trait.

Basically, apart from a technical difference on what kind of implants the two prefer, they both suggested the same for me, except that McDorky’s attitude is much less positive. He refuses to give best case scenarios. He doesn’t exactly give worst case scenarios either, but he is very meticulous at telling you failure percentage rates, infection rates, complication rates, etc. Not exactly the most uplifting visit I’ve had so far. But, I think, it’s great that he’ll be present on Nov. 3rd: I get the cute and sparkly doctor, with the boring but experienced doctor there to supervise.

But no, turns out I don’t have that right either. The second appointment (which I didn’t know of) is with Cute Plastic Surgeon, for what I think is a pre-op visit. But instead he insists that, since he’s leaving for a month, I’d better be operated by McDorky, so that the same doctor that operates also does the follow up (filling up the implant with saline solution to start stretching the skin, check the healing, etc). He assures me he’s not dumping me. I sort of pout and tell him that I undestand I am a difficult patient. He denies. He says he can still see me, if I want to, when he comes back, especially for follow up and symmetry fixings etc., but that I am better off being operated by the one who’s going to be there for the month immediately after the surgery. I wonder if I am going to see Cute Plastic Surgeon again. Bruce don’t mind me: isn’t it better to wake up and see a cute face looking at you and touching what is left of your breast, than to stare half awake at an overweight, food stained, geek? Serena says McDorky looks like the typical grind, who in high school and college does little else but study, and is a genius at what he does. I hope so.

November 3rd, 8am is my surgery. If the right breast is ok, the operation will last about 3 hours. I should have a simple mastectomy, then an expandable implant put in.

Oh and one piece of good news: I overheard the two surgeons talk and McDorky later confirmed that the lymphnodes tested negative to cancer. I screamed in delight!!!

Someone please tell me how doctors’ offices’ schedules work. A few days ago I called USC (Kaiser contracts out on this) for my MRI appointment. The radiologist who saw my right boob ultrasound recommended I get an MRI, just in case (yeah, right!). As I said, I called them and the nice woman on the phone suggested a Nov 3rd appointment, after apparently discarding a number of other dates (‘how about…? No, that wouldn’t work…wait a minute…how about then…?’). I go ‘um…I am having a mastectomy on that date…don’t think I can be getting an MRI at the same time….’ She says ‘oh gee, we need to get you in sooner then: how about October 25th?’ What’s up with that???!!! How come Oct 25th was taken thirty seconds ago?

This goes back to my arguments with the surgeons…many of you know that I have my reservations about demanding fast resolution at the expense of others…or demanding resolution at all…but fear and a survival instinct get the best of me and when I talk to surgeons and doctors I become the ‘difficult patient’ of Seinfeld’s Elaine’s memory. I keep asking when and why not sooner, and explaining how difficult it is to wait, to live each minute with the awareness that cancer is growing in your body and the fear that at any second it could grow to the point of no return. And they invariably tell me that *biologically* it makes no difference to wait two more weeks…except that the two weeks have become two months since I discovered the lumps in my breasts. So anyway, I always leave those conversations with my surgeons both frustrated and defeated: I don’t get an earlier appointment, and I don’t know *for sure* that my cancer won’t grow to the point of no return in those days. I do trust my surgeon. I have no choice but trust her, don’t I? It’s either I trust her, and believe that she has the best information and skills available to anyone at this moment in time, or I don’t, and then I’m at square one, not knowing who to go to and having wasted two months looking for a surgeon that would take the cancer out of me.

But if I trust her to tell me the truth (and I accept that this must be an act of faith), I also have to trust that she is scheduling me as soon as she can, as soon as my case requires. But then how come all these appointments can be changed at a whim, just when you say some magic word that you don’t even know about? So what’s the magic word to mention to surgeons to get a mastectomy done sooner than after two months from discovery (one from diagnosis?).

Then today I got my MRI. Poked once again in the right arm (I never feared injections, but they are starting to get annoying), injected some dye, given ear plugs to soften the noise of the machine, stuck in a tunnel, belly down, boobs sticking out of two holes, for a little more than 15 minutes, warned that if I moved we would have to call the whole thing off and do it again in no less than 3 days…of course, I went into my zen mode, thought calming thoughts, and fell asleep. I woke up when my left arm jerked involuntarily, but it was all over. The technician took me out and told me (he was joking I swear!) I had been snoring. I had lunch in the USC hospital cafeteria (they have the *exact* same food as USC main campus cafeterias, can you believe that???), while waiting for a copy of the MRI films to bring to my surgeon.

As I look at the films, two white circles shining through in the picture of my left breast, and a series of white lines, like spiderwebs springing out of them, I tell myself I cannot possibly be alarmed, as I am not a radiologist trained at reading them.

It’s my sister Raffaella’s birthday today. She’s 36. TANTI AUGURI LELLA!!!!!!!!!!!!!!!!!

On Monday, mom and dad will be coming from Italy to stay here for a little over a month. It’s comforting and dreadful at the same time. Can it be?

Serena and I were discussing reconstruction options. Serena will be the one who goes with me to see the plastic surgeons. I found it very therapeutic to talk about how to proceed with making a new breast-like limb after mastectomy. I have already talked about the different techniques of breast reconstruction; my preferences have been going back and forth between flap and implant reconstruction. My surgeon and Francesca tell me that flap reconstruction produces in general very realistic results. But I do mind the scarring and the limitation of movement. Serena was showing me some of her friends’ new boobs and we’ve been looking at pictures on the web (what if W is watching our searches? Some subversives + perv lesbians!!!) Granted, her friends’ were esthetic breast augmentations. But reconstruction picts on the web didn’t look half bad either (more scars, obviously fake nipple and aureola, but not bad overall). OK, I will have big round twenty-year-old boobs, but hey, who am I to complain? Because I am certainly going to have to match the two boobs, hence do something with my right breast too. I think I’ll go with implants, though I’ll say the final word after consultation with a couple of plastic surgeons.

So, after spending an afternoon talking of and looking at boob jobs I ended up not thinking about cancer, and getting a few laughs in as well. That was marvelous! I wonder sometimes if I could muster up the courage to not have a reconstruction. I admire women who choose not to. My surgeon is among them. But every time I look in the mirror and see my left breast, as droopy as a forty-one year old breastfeeder can be, it simply seem so unreal that soon it won’t be there. And while I can’t wait to have the cancer removed, I also want to savor these last days with my body intact and seemingly healthy, give or take a few aches.

So I hear you: let go of nonviolence when you are talking about cancer. I get it, sure! Though, as my priest Gary told us once in a sermon, there are two kinds of pacifists: those who stress the paci- and those who stress the -fist… I don’t think you need to be told I tend to be of the second type. What I meant to ask was not to describe (my) nonaggressive attitude toward cancer. You bet I am going to do everything in my power and in medicine’s power to get well, if only for Alessandro. Yes, I am going to kick its ass! I guess that I started thinking about this when I read what Melissa Etheridge said in an interview. OK, I am no fan of Etheridge, I mean I didn’t even know who she was until I heard in the news that she had appeared bald at the Grammy’s. I still don’t know any of her songs. But she said something that intrigued me: she had a problem with the phrase ‘cancer survivor’ as, she said, it gave cancer way more credit than it should have. Likewise for me using the terms ‘battle’ or ‘fight’ or anything that implies a formidable adversary is… well… scary. Or I could  see myself as the David against Goliath, but why should I? I mean, David was this improbable hero, right? But there are millions of women who have won the ‘battle’, so there is nothing improbable or heroic about my case. I do want to take this as an adventure, an opportunity to learn something (I don’t know what yet) and, yes, to get out of this alive, somehow better than before.

Alan and (privately) Toni tell me I shouldn’t be afraid or scrupulous about using violence metaphors to describe my adventures with cancer (there you go, I found a word!). Since Toni has so far abstained from posting to the blog, I heartily recommend you read Alan’s comment and enjoy, like I did (I love you Alan!), his elegant and eloquent prose, not to mention his unmatched wit.

I had a rough two days. But what was tough did not have anything to do with dealing with cancer. It was all about bureaucracy and the frustrations of having to sort through hurdles that shouldn’t be there, or that you feel you shouldn’t have to tackle with, at a time when there is definitely a more important problem for you to solve. I screamed and cried with poorly trained and seemingly unsympathetic office staff at Kaiser, just to get some explanations (I won’t bother you with details). And of course while I was frustrated, angry and desperate I can also appreciate the fact that I can’t know what those office workers were/are going through in their own lives that make it hard for them to professionally and compassionately talk to overwrought patients with cancer. Not that I didn’t think about calling Kaiser’s customer service and file a complaint. The only reason why so far I haven’t pursued this, is that it’s one more thing to do that has nothing to do with helping myself and my family and friends go through life with cancer. Toni would call this realignment…in this case of priorities. Let’s say that filing a complaint against Kaiser is not among my priorities right now, for better or for worse.

But I lied, that’s not the only reason that I don’t call Kaiser customer service. The other reason is that, while I had some heartache and headache yesterday and this morning, I also had quite a surprising trip through the smiles, compassion, empathy, and wise advice of some other Kaiser staff and then of my friends, both yesterday and today. So I choose to tell the story of that.

Yesterday, the ultrasound technician was absolutely fantastic! She made me feel comfortable, cared for, worthy of all attention. She chatted around with me about what kind of physical exercise we do (she likes kickboxing, like Geert….I might have to check it out myself!), the aches and pains of bad posture and work habits, Italy…then she ventured tactfully into talking about cancer, best surgeons, the on call radiologist’s methods. She even called in a colleague of hers whose cancer has been in remission for five years in December to help me feel less scared. She reassured me that my surgeon is the best they know. She was plain wonderful. No wonder I had to wait over 1 1/2 hours to see her: she takes her time with patients, so she probably used the same courtesy with the patient that came before me. After I got out of there, the admission clerk, an armoire of a man, with a tough-looking appearance and a sort-of cavernous voice, ran after me (commenting how fast I walked) and kindly offered me a coupon to the Kaiser cafeteria and gift shop, as a small compensation for having so graciously waited for so long. I admit, I flirted shamelessly…after all, I don’t know I’ll get to do it so effectively after surgery :-).

Then today, after having screamed with people on the phone, at one point while Sandro was in the car with me, cried, felt hopelessly out of control, I was eventually called back by a Kaiser angel who listened to my concerns, explained their procedures to me, and finally set up an appointment for a second plastic surgery opinion without me having to wait for the first appointment to take place (hence needlessly delay the mastectomy).

In all this Serena and Cecelia were oh so helpful! They listened, cried with me, talked to my family in Italy, comforted me, made me feel less guilty about shouting and screaming to people while Sandro was listening. And then I receive phone calls, emails, books in the mail…I love you all and I don’t feel ashamed about being smoochy. I have an excuse! Thanks friends!!!

Catia this morning couldn’t sleep. I woke up about 1 1/2 hour ago, tossed in bed for an hour, then gave up and came to the computer. Wrote some emails, canceled my participation at a conference for the 20th, checked out the new yahoo webmail then thought what the heck I can write something in the blog.

Blogs are funny: they pretend to be like personal journals but they really aren’t. You sort of write for yourself, but you also know it is going to be read by a number of people, sometimes a large number. So you can’t really write everything that comes to your mind. Well, you shouldn’t. But they are therapeutic in a way, at least that’s what I’ve been told. So I am writing at 5:30 in the morning, to pass the time. If I was still a smoker I would now get my morning coffee with a cigarette and go out in the cold, shivering with a butt in one hand and a mug in the other. Because I quit the habit last Sunday night (with six of my friends here, we had a smoke-out party, with goody bags filled with stuff to keep our minds off of cigarettes in the next days…can’t beat this support group!) I think I’ll brew my espresso and sip it in front of the computer…

Ok, caffettiera on the stove, ready to blog some more. Why did I wake up? I don’t know. This happens to me so rarely that I really can’t explain sleeplessness. All I know is that I woke up and started thinking of what happens next. My oncologist friend was a little worried that the cancer is in my left breast, because radiation can be cardiac toxic. Also my surgeon confirmed to me (I had kind of guessed by looking at them) that my mammos from last year look entirely different from this year’s mammos. That speaks of a fast growing cancer. On top of this, she found another little lump at 12 o’clock, that the nurse hadn’t felt last week. It grows fast and it’s scary.

I let the surgeon schedule the next surgery, whatever that is, for the 20th even though I will have to miss a conference I was looking forward to in San Diego, because I just want to have this done asap. Bruce was asking whether I wouldn’t like to have the mastectomy after our trip to Hawaii on Thanksgiving, to be on the island with both my boobs not thinking about cancer, but I won’t be able to not think about it, boob or no boob. It’s like aliens have taken hold of the boob, so until I get them out (and I am so sorry, boob, I have to take you out with them!) I will feel invaded and violated. We might actually have to miss our Hawaii trip as well, at least postpone it, depending on when the actual mastectomy will be performed. My surgeon offered to write a medical excuse letter to help us get a refund or a postponement. We’ll wait and see. I want to promise myself that these will be the last things I want to do and are important to me that I’ll miss because of cancer. I know I can’t really promise that, because there will be more surgeries, more doctor’s appointments, treatments… but I do want to promise nevertheless, to force myself to not give in to the disease, to keep living to the fullest (cancer is just one more reason to do so), to not delve in self pity as tempting as it is. A friend told me that when she was diagnosed with a cronic debilitating disease a few years ago, doctors had told her she wouldn’t be able to keep traveling, working hard, doing all the things she did before. She is still traveling, working hard, publishing, being a champion of human rights around the world, teaching…me how to do it in spite of the odds.

I have met so many who have told me how they have won their battle with cancer or other illnesses since I’ve been diagnosed and out. OK, being inclined toward nonviolence I am not sure I like the word battle here, but you get the jist…actually, why don’t I propose that you suggest another way to call this…kind of like when Dan Savage asked his readers to find a nasty definition for Santorum (some of you will remember this, some others won’t know what I am talking about but that’s ok)…So friends, if you are so inclined, tell me what we should call people’s ‘fight’ against cancer, with a word that doesn’t speak of violence and doesn’t give cancer too much credit either (like me thinking of it as alien invasions…that’s way too much credit!), but also speaks to the fear and to the hopes and to the courage and disillusionment of living with and despite it. I won’t even call this a competition, because I don’t like that too much either (in principle), but I think this would be a good exercise for me at least. So, ready…set…go! Suggest! Invent! Give me a new word!

Ieri pomeriggio sono andata in chiesa a parlare con uno dei sacerdoti della mia parrocchia, una signora della mia eta’ la cui sorella e’ morta di cancro al pancreas qualche anno fa. Strano…nonostante sia stata abbastanza calma e pragmatica in questi ultimi giorni, da quando ho visto l’infermiera, non ho potuto resistere al pianto parlando con Julie. A dire la verita’ il pianto mi viene abbastanza facilmente, basta solo pensare al mio cancro per piu’ di qualche minuto o di sfuggita e mi vengono le lacrime agli occhi. Penso sia normale. Mi preoccupo molto per la mia famiglia in Italia, perche’ so che se fossi nei loro panni mi sentirei nel panico, per la lontananza. E poi anche questa cosa del blog…anche solo la schizofrenia di scrivere in due lingue diverse per due audience diverse. In realta’ non e’ tanto un noioso lavoro di traduzione che voglio fare, ma scrivere in italiano o in inglese a seconda dell’umore. Ma alcune informazioni dovranno per forza essere duplicate. A meno che non escluda la mia famiglia e alcuni (pochi) amici italiani che non leggono l’inglese. Ma questo non lo voglio fare. Comunque anche questo mi fa sentire lontana dalla mia famiglia, dalle proverbiali radici che in qualche modo ho abbandonato.

Julie, la sacerdotessa (nella Chiesa Episcopale abbiamo preti donne, preti sposati, preti divorziati, e preti gay), mi ha aiutato in un esercizio di meditazione, incoraggiandomi anche a usare le tecniche di respirazione yoga per far scorrere l’ossigeno alle parti del corpo sulle quali ci si concentra e per purificarle, anche se solo spiritualmente (solo???).

Mentre meditavamo mi e’ passata nella mente l’immagine grafica del mio cancro (o cancri), come di una massa gialla, bubbonica e maligna con intenzioni funeste e mi veniva di parlargli, di chiedergli perche’, di chiedergli di smetterla di farmi male. Non che ne’ io ne’ Julie crediamo ai ‘miracoli’ di guarigioni effettuate col potere della preghiera di chi ‘crede veramente’. I miracoli piuttosto sono su di noi, su come riusciamo a vivere la vita con tutto quello che ci offre. In questo credo, anche se per adesso sto ancora aspettando questo grande momento rivelatorio che mi insegnera’ qualcosa di veramente importante sulla vita. Per ora vivo il tutto cercando di essere il piu’ pragmatica possibile, ma ogni tanto l’emotivita’ si insinua, e non credo sia una cosa sbagliata o evitabile. Una mia amica che soffre di problemi mentali dice che quando cadiamo a pezzi e incominciamo a romperci Dio coglie il momento per entrare da queste nostre crepature. E’ un’immagine bellissima penso.