Catia Bitching Cancer

…un grosso benvenuti sul mio blog! Cerchero’ di scrivere molto di piu’ in italiano d’ora in poi…proprio per voi. Vi abbraccio forte!!!

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.

So, after getting in a screaming match with an appointment clerk at Kaiser (well, match is not exactly a fitting word, since I was the only one screaming, she was just being condescending and snippy), I was called back by my surgeon, and then her appointment nurse and given some appointments. On the 18th I will have pre-op procedures, like electro-cardiogram, blood tests, xrays, and whatever else they need to do before a surgery. On the 19th I will see one plastic surgeon for a consult. If he says I am a candidate for immediate reconstruction, then on the 20th I will have the sentinel node biopsy. I won’t have to be in the hospital overnight for this. If he says I will have to go for delayed reconstruction, then I will have a mastectomy and sentinel node biopsy at the same time on the 24th (in which case I will have an overnight stay at the hospital). On the 26th I have a consult with a second plastic surgeon. Serena has kindly offered to come with me to the plastic surgeons’ appointments, so that she can help me choose the best one for reconstruction.

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!

I saw the surgeon (a cancer survivor herself) earlier today. She strongly advised me on a mastectomy, because the size of my breast and the location of the two tumors (plus another area she did not like the feel of at 12 o’clock) made the esthetic results of a quadrantectomy really dubious. The issue now is whether we are going to pursue a simple mastectomy (removal of just the breast) or a modified radical mastectomy (removal of the breast and of the axillary lymph nodes – the limphnodes under the armpit). That would depend on whether my lymphnodes screen positive to cancer.

Since I am considering immediate reconstruction of the breast I will talk to a plastic surgeon first. The general surgeon is setting an appointment time with him. In the meantime she put some time aside for me to either do a sentinel node biopsy or a mastectomy on October 20th. She’ll do the biopsy if I am trying to pursue immediate reconstruction, to make sure that I won’t need radiation (in which case she suggests I do a delayed reconstruction). I will also talk to the plastic surgeon to see what he recommends in my case. If I choose immediate reconstruction then the two surgeons will have to figure out a date and time to perform the operation together.

So, in a nutshell. Something will happen October 20th (either a mastectomy without reconstruction – one night at the hospital – or a biopsy – outpatient procedure). Between now and then I will see a plastic surgeon. Tomorrow I will have an ultrasound done on the right breast to make sure I don’t have bilateral cancer.

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.

So, what does this mean and what are the possible treatment options?

For those of you who know me best, you will also know without me telling you that I immediately started researching about breast cancer. I looked up cancer sites to get the basic information about ductal carcinoma, grade, classification, etc… and when I thought I understood most technical terms I started skimming journal articles. I wanted to be prepared to ask questions, but also to be able to determine, by asking questions, whether my team of doctors and nurses was up-to-date with the current research and competent.

I also contacted a friend who had the same insurance and had had breast cancer six years ago. She and her husband directed me to a few websites that had been useful to them. Finally, I told my best friend in Italy, who is an oncologist. She gave me more information, as well as more websites to look at. I spent over a week doing research. I can honestly say that I am able to make informed decisions about my future treatment, though no decision is going to be easy or risk-free.

The low-down of it is this: I have a multifocal or multicentric carcinoma (there is more than one site, but we don’t know yet that the two sites are related to each other – multifocal – or independent from each other – multicentric). That means at the least having a quadrantectomy (removal of one quadrant of the breast). If the margins (the area around the cancer that will be removed together with it) are clear (no cancer), then with radiation and possibly chemo, the recurrence and survival rates are the same as if I had a mastectomy. The left breast, and indeed both breasts, will have to be constantly checked, to catch any recurrence real early. A quadrantectomy would save part of the breast, but depending on how big it is, the breast might be deformed. I could however, have a small implant put in and have the plastic surgeon match the two breasts. My age indicates treatment with chemo, but it is a little premature right now to think about that. Also, radiation treatment will have to be performed if I choose the quadrantectomy.

The second option for surgery is a mastectomy, but there are several types of this. The most common mastectomies nowadays remove the entire breast (simple or total mastectomy) and, sometimes, some of the lymphnodes in the underarm (modified radical mastectomy). Rarely now do they remove the chest muscle and all lymphnodes. With a mastectomy I likely won’t have to have radiation, but I still might have to have chemo.

Because there are several suspicious microcalcifications around the breast, it isn’t clear what kind of surgery would be more indicated. That is, while the quadrantectomy delivers the same outcomes, provided there are clear margins, I don’t know yet whether I can expect clear margins. One possibility would be to have the surgeon remove the two carcinomas first, biopsy all suspicious areas while I’m under, close up. If the suspicious areas turn out to be cancerous or precancerous, or if the margins were not quite clear, then the surgeon will open up again and perform a mastectomy or just remove more tissue to make sure the margins are clear.

Moreover, the surgeon will have to determine whether the cancer has spread to the lymphnodes in my armpit. To spare you the technical details, basically if a modified radical mastectomy is performed, lymphnodes are taken with the breast. If a simple mastectomy or a quadrantectomy are performed the surgeon could also take a few strategically located lymphnodes, avoiding extensive scarring. There is a procedure called sentinel node biopsy that helps determine which nodes to take out, but this is generally not indicated for women with multifocal or multicentric cancer, like mine.

The treatment to follow surgery will be based on whether the lymphnodes tested positive or not, plus a number of other questions. This is something that I will study and talk about later.

If I choose, or have to choose, a mastectomy, I am quite sure that I will also pursue reconstruction of the left breast, and matching of the two breasts for simmetry. I can have a reconstruction started concurrently with the mastectomy (simultaneous), or later (delayed). Depending on what treatment one envisages, it might be better to have delayed reconstruction. I will have to talk to the surgeon about this. Also, there are different types of reconstruction, and so far I lean toward having implants put in. It’s a longer procedure (it involves several sittings for stretching the skin), it does not last your entire life (I’ll have to have the implants changed sometime in the future), it might be more painful, but it doesn’t give me additional scarring or take away muscles that I want to keep using (like abdominal muscles or back muscles as in other procedures). But again, this is not something I will have to decide immediately.

I think this is it as for information. I spared you a lot more details than you can imagine. I also spared you pictures 🙂 But know that I have done my research, I have a good support network, both for medical information and for emotional support, and I don’t go into this uninformed or unprepared.

I will keep you updated.

I was sitting outside sipping my morning espresso and stretching. Bruce and Sandro were still asleep. The previous day had been really intense and enjoyable. We had been with our ‘commune’ (the three/four families that are always doing things together) at Crystal Cove State Park Beach and boogy surfed. I got a lot of beatings from those big waves, but we all had a terrific time. So, I was sitting and stretching and scratching and while I scratched I found a lump in my left breast. I jumped up, waked Bruce to check it out. The following day, a Monday (it was August 27th 2006 when I found the lump, three days after my 41st birthday), I scheduled an appointment with the breast clinic at Kaiser for the following Friday (September 1st). On Tuesday, as I was telling my friend Lauren about the discovery (hence the first ‘D’ in the title of this post), I discovered another lump. As I learned later the first lump was located at 5 o’clock (think of a breast as a clock, as you look at it), the second at 6 o’clock, more or less both then in the lower outer quadrant of my left breast.

To make a long story short, the nurse appointment confirmed through breast exam that I did indeed have two lumps. She tried to aspirate them in the hope that they were cysts. Nope, they weren’t. So she scheduled a mammo and ultrasound. She told me the radiologist might also perform a biopsy. The appointment was for September 18th.

On that day, I had a mammo taken, then an ultrasound, then the radiologist came in and confirmed he had seen the two lumps on both the mammo and the US, and told me he was going to go ahead and perform an US-guided, needle core biopsy on both sites. He also told me he wanted to schedule a mammo-guided stereotactic biopsy for other sites that showed suspicious microcalcifications. The biopsy was no big deal, he put in titatium clips to be able to locate the biopsied sites in the future, then had me take another mammo and set an appointment for the stereotactic biopsy for Oct 2nd, bumping the appointment with the surgical clinic to Oct. 6th.

On Monday, Sept. 25th I learned by phone the results of the first biopsy. I was diagnosed (hence the second ‘D’) with infiltrating ductal carcinoma, grade 2 (NOT stage 2, grade is a histological classification of the appearance of tumor cells, not an indication of how advanced the cancer is). One of the lumps is partially a Ductal Carcinoma in Situ, which is a good sign, but it is only partially so and the other is entirely infiltrating. The two sites are relatively small, each between 1 and 1.5 cm. in diameter. This is basically all the information I have at the moment.

The other biopsy on Oct 2nd could not be performed, because after I was prepped and everything was ready and about to start, the first mammos showed that the suspicious microcalcifications were located too close to the skin to be able to perform the stereotactic biopsy.

On Ocotber 6th, the nurse reviewed all results with me, gave me a range of possible treatment scenarios, and set an appointment up with a surgeon, herself a cancer survivor, for Oct. 11th. I will see the surgeon tomorrow at 9:15 am.